Frightened

hi Longtallsally. many ppl with ME/CFS find their symptoms exacerbate when the weather pressure changes, especially when it drops from a  higher to a lower pressure.  presently we're having  a prolonged  low pressure stint.

my already low B/P drops further @ these times and i frequently pass out if i don't get lying down in time. other times my legs just go and i slump to the floor wherever i am. pain also exacerbates ++ @ these times.  u might also have a mild version of Pots.  have a google.

re:  the DWP: theres an on-line  organisation called ''Work and Benefits'' who give invaluable advice on how to deal with the DWP.  you have to be a member - costs  £19 i think, but  i'ts well worth it.

 the  other option is to get your MP involved. once i got onto my MP  who wrote to the local council (housing) & the Welfare minister, the  DWP backed off - or at least for the time being. 

Caitlin

 

Hi Caitlin,

Found your comments about the low pressure interesting. Its not something I'd heard of before-an environmental element. Are you feeling "worse" at present?

B

Hi Beverley, I also feel the weather changes, anything with a drop in pressure in the weather does cause me to be worse.... i also get affected by thundery weather  and while the presure is increasing i dont magically feel better straight away but over a couple of days will begin to feel that bit better and concentration improves

Hi Andrew,

This is really interesting to me as its not something I've been aware of. it adds something extra to take into account and observe. If I have the energy at the same time as the weather changes to do so, I'll try record it. I know i've been having a 'bad' phase for a few days but last week was busy (more social contact and travelling) so put it down to that. I know for lots of people with rheumatism that its affected by the weather. I feel I'd like to know more.

Thank you for this

B

I would liek to know why too! oddly - i have a brocken finger (healed ages ago.... hmmm) anyway it alsways aches when the weather is changing for the better or for the worse. Draw a graph of date and how you feel score out of 10 and then at the end of a week go back over the pressure record ad see what you felt like on what days, ideally you want three scores each day. or better  still get someone to record the pressure of the day for you each morning afternoon and evening and send it to you  to plot. i would be very interested in your results... 

seporatly i have a heart issue or two and it responds to the weather differently. 

I may well do this! Its certainly given me something to think about. I have kept a diary since roughly 3 months after symptoms began so, I have a kind of idea of how I've been. Just wondering, was your cfs/ me from a virus? It seems most people's on here is.

You say you have a couple of heart issues, is that pots? I've only recently joined the forum and found out about pots. I don't have it but, there seems a link for some people.

B

My ME/CFS seems to be from Glandualr fever when i was much younger and then set of by a series of chest infections and sinus problems... so yes a virus...

I have POTS, annoyingly, but the added extras are Prinzmetal Angina, brought on by stress at work and or Cardioversion of Intermittent Arrhythmia, itself brought on by Fit Heart Syndrome as my GP calls it and this is backed up by work by Prof Pearson and the Athletic Heart. - i was a very good sprinter from teenage to mid forties, and sub 4 hour marathon - base heart rate of high 30's to low 40's

How does that affect you and do you have medication with that? Do you have to lay down with the pots?I have cardiac arrhythmia that is positional which sounds odd but just means the rhythm can be knocked out of sink just because of how I'm stood,sat,walking etc. No meds and not related to the cfs.

So did cfs just hit you one day or a gradual thing?

have meds for the heart..... and thyroxine stuff, Flecanide for Arrhythmia as pill in pocket, GTN spray, Tildiem twice daily, Nitrate for overnight........ Positional Arrhythmia is fun too - i can do that if i slouch watching tv.... so dont slouch (darn) otherwise it sets off in low demand times - overnight, sitting reading (not slouching) watching a film / tv and relaxed, and so on. The spasms usually at rest too.....and they really hurt!!!!!!!!!!!! Me came on first time quite quickly final starw came when i fell asleep driving one day and realised yup i couldnt ignore it any more luckily for me and others i went onto the grass verge.... over three years fought it off hadan ok 18 months but being a nit ambitious both at work and athletics i pushed too hard and slowly but surely it all came back and got worse and worse till now it is twice as bad as before and still going down. Trouble is i need to be active to help my heart (within sensible limit) but that is too active for my ME/CFS....... not found the balance yet. Its like walking down the middle of a busy road do too much and drift one way i get hit do too little and drift the other way i get hit by the other.... might be worth your while asking about pill in the pocket - flecanide, it does help! 

Hi Andrew,

Its so hard not to over do things with this condition, well It is for me. Not knowing if it will hit you later. I totally get the walking in the middle of the road, although for me its pain I get one side, cfs the other not the heart issue. The arrhythmia in my case is manageable as I've learnt that if I make the figure of an upside down 'v' it usually goes. Harder to do in public though :-)

Before my cfs, I was a walker and I truly miss that. At first, I did do a 5 mile walk a few months in and the pain and pem was too much, so, not listening-I tried again a longer walk. I wasn't diagnosed yet so thought it was all due to recovering from the car accident and bang-agony and more pem stuff. It took me ages to build up to 15 mins swimming then half an hour but recently, have done no exercise. Its such a tough balancing act to manage. Have you been to cfs clinic? I bet they don't know how to approach things given your conflicting conditions.

B

hi beverley.  ''positional cardiac arrythmia'' does  sound odd.  how does it affect you?  do u know what causes it? is it treatable?

 

Hi Caitlin,

I 'Ve been away a few days and so only just replying. The doctor said (20yrs ago) it was due to the area around my heart being slightly larger than needed and thus if I move quickly or in an odd position, it can kick In. Most of ofthe time, just for a short amount of time. its a bit quirky.

B

Hi Beverley.  thank u for that.  hope u had a good time away? it sounds that you are ok with ur  'quirky' heart - that brings a smile?

C.

Hi Caitlin,

Yes Thankyou, the time away was good and even managed some walking but am back to having to rest today!

With the heart thing, I've kind of got used to it and although I've had a couple of scary times with It, its manageable as it were :-)

How about you? You mentioned about your low BP, is this a contributory factor of the cfs/me or separate?

B

Hi Beverley.  nice to know u had a pleasant time away - a change of scenery is always 'energy shifting' & healing provided one does the necessary  'rest' afterwards.   yes, i can understand the 'scariness' of the quirky heart situation?  coz the heart is so fundamental to survival, any deviations from the norm can be v.  frightening. good to know u have it in hand.

re: low B/P:  following severe chest pain, i collapsed @ home, my normal B/P of 130/70  dropped to 70/50 ish. & stayed there for a couple of years. it's coming up now, albeit slowly.  the GP wasn't  interested as i wasn't ''heart attack'' age. unfortunately, she was of the elk that ME/CFS is ''all in the mind''. i got a second opinion from an ME/CFS expert whose an environmental Doc..  she explained it as POTs & cardiopathy secondary to mitochondrial failure.  she did some 'specialised' mitochondrial testing and i was in quite a degree of mitochondrial failure, quite deficient in key heart nutrients namely CoQ10 etc.  she commenced me on a specialised protocol which helped, but it was only when i started supplementing  b12 that i saw a BIG difference.  think i must have been  very deficient in b12.

many ppl with ME/CFS have b12 deficiency, and many ppl are mis-diagnosed as having ME/CFS when in fact the have low b12.  i should have known as Pernicous Anaemia runs in the family.  so it seems  the chest pain/collapses etc were the result of  a combination of factors. 

i changed GP practice and did get referred to a Cardiologist and had the necessary tests: ECG's/Echo.  i'm waiting on the results of the 'table tilt' test. hope i haven't bored u with the details, but i think it helps with raising awareness of the potential possibilities when we overdo it. 

C

Hi Caitlin,

Not bored me at all, find it fascinating in honesty. I take a multi B but do forget sometimes. I had B12 deficiency several years ago-post cfs-and I used to fall to one side as my balance was affected. Doctor did blood tests and only abnormality was that. It went when I started taking the B12. I'm a milk free vegetarian so b12 is something I am aware of needing to keep an eye on. It takes six years for you to become deficient with It.

I saw a specialist on Thursday who said I have cfs with fibromyalgia and that was a relief to some extent as I often feel unbelieved! I put the pain down to just over doing things when I've been Inactive and then active. And travel causes pain.

How do you feel about the mitochondrial failure diagnoses and treatment? I read a little about this and as I knew a little about cell structure from biology, found It surprising.

Hope you have sunshine where ever you are in the world.

B

hi beverley.  indeed, the being 'not believd' is a common phenomenon with ME/CFS. some of us don't have many external objectively identifiable symptoms/markers. and coz some of us look 'ok' we get they doubting response.   it can have devastating effects when one's struggling so much with the limitations of the condition and the 'experts' give the impression they don't believe us. worse still is the attitude that   'it's all in the mind' inferred or articulated.  it feels like a double wammy.

re: the 'mitochondrial failure' diagnosis: coz i was so compromised (lying flat for 8 hrs a day) i was pleased to have a 'marker' (explaination) that i could actually treat and monitor with the treatment regime. the treatment protocol helped the chest pain and other symptoms considerably, but it took some time.  then when i added the b12, it had a measurable effect.  good pacing is central to & imperative with this approach.

It's really interesting that you've had B12 deficiency in the past.  it might be worth checking exactly what  your b12 levels were @ your last test. you might have been in what's called the 'grey area'. in short, the 'grey area' is where the patient is symptomatic- fatigue, joint pain , paraesthesia, memory probs etc.  etc (usually neurological symptoms that have a big overlap with ME/CFS, MS etc) but the serum b12 levels are in what the medics consider the 'normal' range.

unfortunately the 'normal range' is set very low in the UK and some European countries - generally speaking below 200.  in Japan it's 500. the medics tend to rely on the blood tests to diagnose b12d, rather than the clinical picture/symptomology.  to boot, the serum b12 test is very unrealiable - correct only  50% of the time - lots of false negatives etc. it measures ALL the b12 levles in the blood stream, rather  than the 'active' b12 available to the cells.  there are other test that can help narrow down the 'active' serum  b12 levels.  it's quite a complex condition.

if u wanted to explore it further, have a look at the Pernicous Anaemia Society web-site.  they have a contact number on there too. they are very helpful.  the other incredibly knowledgeable website is the 'Health Unlocked' website in the Pernicous Anaemia section.  there's an excellent interactive forum on there.  i learned so much from the experts on that forum - first hand info. on research etc. from ppl who have the condition with links &  signposts to  all the NHS guidelines for treatment etc. it's invalauble.

best regards C

Hi Caitlin,

I will check this out, Thankyou. I have a friend who also has cfs/me and has chest pains and had an iron count of 14 recently, much lower than when diagnosed. I'll ask what about b12. My own cfs/me was caused by a near fatal car accident. I was told my fatigue was expected due to the huge physical and psychological trauma. After 18 months, (I think! ) I asked my doctor if it were "normal" to still be like this.

Hence, trips to specialists and a referral to cfs/me clinic. I knew I felt awful from the day after the crash. The same awful I still get, which turned out to be cfs/me. Its so strange that such different paths lead to this same destination.

Thankyou for the info, I will check it out later.

Best wishes

B

Hi Beverley.  i'm so sorry to hear of your near fatal accident and the subsequent affliction with ME/CFS.  your body must have sustained a phenomenal assault to shut down with the shock/trauma of the accident. thank heavens you're in one piece despite the ME/CFS outcome. guess, we must be thankful for small mercies sometimes.   indeed, there are so many paths to this illness.

i'd certainly, follow up on the b12, especially since your'e susceptible to low b12. i've met so many ppl who end up with both b12 & thyroid problems having been diagnosed with ME/CFS.  with ME the body seems to have such a challenge to keep the systems running smoothly. 

in respect of your friend with the chest pain, she may have poor cardiac output  which is relatively common in ppl with ME/CFS.  there's a very good research based article in the 'Breakthrough' magazine from ME Research UK.  it's in issue 16 - Autumn 2012 & explains the many ways the  circulatory system can be affected by ME/CFS. the research is based on the work done by Prof. Julia Newton & her wonderful team @Newcastle university.  it's well worth a read on-line.

i do hope you have been referred to a local  ME/CFS clinic that help with the optimal management of the condition?  

best wishes

Caitlin

Hi Caitlin,

Thank you for your concern. I did take quite a hit with a fractured spine and had ptsd like symptoms. I referred myself for therapy and physio and imagined I'd be back at work within 3months! Then 6,12 ...18 ...but have not yet returned. its been quite a journey and has taught me alot and is still teaching me. Like everyone on here-I want to get better and have seen some statistics around this. On good days, I believe I will. In regards the b12 , corresponding with you has reminded me to take my "b's" again. I got onto them quite early after my injury as some days were pretty bad and I know that the b's are good mentally as well as for repair. I also had calcium , vit d (another fatigue factor when low) vit c and zinc. Hopefully these helped in the early days.

I was glad of the cfs diagnosis as it meant that my symptoms were real. I was getting sick of people telling me my memory problems were "that's cos yr getting older" like the crash had brought on old age! People's attitudes can be so disappointing.

I will definitely look at the research, it helps to know what the thoughts are around the condition academically. The cfs clinic I am attending is carrying out research for Bristol university I believe. I find the idea of finding a 'base line' useful but near on impossible, how about you? Is your clinic helpful? Did you have to fill out activities worksheets? or are you waiting for for the tilt test results first?

Best wishes

B

hi Beverley.  gosh it feels  that u took quite an impact & by the sound of it, possibly you're lucky to be as mobile as u actually are.  what area of your back was fractured? do u have back pain as a consequence?  

have u tried EMDR  (Eye Movement Desensitization and Reprocessing) for PTSD at all.  it's got reasonable research behind it with a reasonabaly good outcome history too for 'flash backs' etc.. it can be accessed via  some of the  '' Increased Access to Psychological Talking Therapy' outlets.  think u can self-refer or obviously your Doc or main access  person @ the ME/CFS clinic can refer you also.  

i can certainly understand the feeling of relief one gets with a diagnosis. coz ppl have NO understanding of the EXHAUSTION, pain etc  involved and at least a 'diagnosis' confers some legitimacy on one's challenges & limitations in this respect.  yes indeed,  the 'unsympathic' response of 'just try harder' or/and 'get on with it' is quite common'. best ignored but can be  very difficult to take, particularly on the 'down' days.

that's interesting that the clinic is carrying out research for Bristol Uni. is that to evaluate the impact of the  ME/CFS management program?  yes we had  to do the log sheets also to establish a mobility baseline.  it is difficult, especially if one's symptoms fluctate a lot.  mine did.  i didn't finish the course coz i relapsed half way through it.  i was of the determined mind that i'd kick the disease & tried too hard.  there was a lot of a kind of implied pressure of 'you can do better' attitude from the professionals running the course & some of us  over did it.  it was in the early days of the course.  i'm sure they work more individually with participants  these days.  how's it going for u so far? 

Caitlin

Thanks! I'm sorry to say that I am feeling sicker that I've ever felt before. I have been going down the last couple of years, and now it seems as though I won't be able to work. I surely hope that I can get disability; otherwise, I will have to go live with my mother in law. Ack! I hope you will feel better. This disease is quite evil and no one deserves to get it. Take care of yourself.

Hi Caitlin,

Its a pity you got the "do better" message from your cfs clinic. Sadly, there Is alot of pressure to heal yourself. As you say, kind but un-thought out, words. I think the cfs/me service works similarly to the IAPT program. I have been given 8 sessions with an individual therapist. I feel she hears me and is genuinely empathetic. The downside, is the time limited approach for both services. She has been off sick for several months, my next app is October so, I shall see and I'll find out what the study is fully studying. Btw, There's options for group, individual and telephone sessions now with an emphasis on relaxation and mindfulness it seens..

Re: emdr, yes, I had this quite early on, a psychiatrist said it possibly did more harm than good, I myself felt It useful at the time but, time limited and I still have some symptoms around loud noises and in cars, I react to things that I didn't do before.

Regarding being mobile, yes-I was very Lucky. I had an L2 fracture, some soft tissue damage, loss of sensations (no longer ticklish down my sides) various pains and i can no longer carry things like shopping, through pain. Kind of a good thing cfs/me wise. Most of the time, not in as much pain now, as I don't do things that cause it. Its more the payback cfs stuff is the issue.

Yes, I wish more people would understand exhaustion is more than just very tired. Especially, professionals. One day :-)

Do you still have any cfs clinic input? How long have you had it now?

Beverley

hi beverley. gosh the accident sounds quite terrible.  guess, u were lucky that higher up vertebrae weren't damaged. it's understandable that ur body  remains in such shock?

 that's an 'interesting' comment from the Psychiatrist re the EMDR - he's obviously not a fan?  perhaps it's too  new fangled for him???? guess one would need on-going input to get any real impact from the EMDR & the IATP but the input & duration tends to be standard - a kind of a one size fits all approach.  

i had the 'group' approach on the ME/CFS course & it was very much a 'one size fits all'.  it's good to hear that one-to-one & telephone sessions are  available these days.  i think it's a bit of lottery or post code luck as some centres even do home visits and others are group only & i've heard that they are considering using NLP too.

p.s.  gosh that reply just did a' self - send' on me.  to answer ur question, i've had the ME/CFS for a long time - a boom-bust approach that has plateaued to a permanent 'bust'.  i did ask for some input from the local ME/CFS clinic when my symptoms became more complicated   (i.e. POTs/Cardiomyopathy etc) but the Doc is off sick too & they sound very 'pushed' & understaffed & i wouldn't be up to travelling. que sera sera ???

Hi Caitlin,

I was very lucky yes. I wrote a better reply but this silly phone deleted it! I've had a rest day-not by choice today and feel out of it.

Sorry to hear you 've had this a long time and you feel permanently at bust. Mad question, what do you like to do for enjoyment? I used to like dancing

B

don't laugh.................rock climbing................running half marathons..........walking in the lakes...or anywhere......cycling.....travelling to remote parts........art...poetry....studying...........etc..........think i intimately know every spot on my ceiling by now.............as you're most probably finding out, it takes time & lots of patience to adjust?  is this 'heavy' overcast weather adding to your bad day?  i really detest this weather....?

We can both still write poetry and draw/paint. I walked 30 miles a week pre accident and two months before did a 17mile walk to and from ravenglas Roman bath house to the Roman fort on hard knot pass. We were blessed to have had such good history before cfs? I once walked from from chigwell essex to London central to raise money for a charity I worked for. If I get well, I'll maybe raise money for research into this condition.

B

wow 30 miles a week is pretty good exercise.  was that trecking  in the lakes or general walks to work etc.?  yes, it's good to have had a good quality life before ME/CFS but it's also very painful when one realizes what we've been deprived of.  i find it hard not to be outdoors trecking etc.  i haven't found any meaning or purpose at all in having this illness.  many ppl make reasonable adaptations, are philosiphical and even find a kind of deeper meaning to life by the experience of being ill. can't say i have found any???  do u have insomnia too?

Hi Caitlin,

I used to walk locally for 30 miles. I live by the canal so nice walking. Was working towards doing the three peaks! Kind of amusing :-) It is hard to remember how we were before yes. To hope we can get back to somewhere near where we were. A very Difficult adjustment when we've been so active. Do you get out for short walks or have a garden?

I don't have insomnia per say but, I have an up and down sleep Pattern. I haven't discovered my "deeper meaning" yet if I have one. Just as you said previously, you have to learn patience with this.

B

WOW ........do u mean the 3 peak challenge as in Scafell Pike, Ben Nevis & Snowden all in a weekend with torches etc. ........???  my ex and i had signed up for one of those week-ends  some  yrs ago, but his mum suddenly took  ill and we had to call it off. we never got round to arranging it after that, but we had done  all  the peaks on seperate occasions. however,  none of them's a challenge on their own, unless done in mid winter when 'navigation' becomes a challenge (well for me anyhow as i'm hopeless with maps/compass etc). we did a number of the trecks in Nepal instead, thinking we can do the peaks anytime as they're on the doorstep.......famous last words eh................????  yes, it's hard to re-inhabit that carefree healthy  life/world now with these dodgy bodies???  do u think, that if you could successfully treat the shock sustained by the accident that you would recover from the ME/CFS?  have u tried anything else other than the EMDR for the shock?

Hi Caitlin,

It was the Yorkshire 3 peaks of ingleborough, pen y gent fame. The idea Is to complete in 12 hours with that. I loved walking, mostly flat and really enjoy nature. Flora and fauna still interest me and I am lucky to have a canal at one end of my street and river at the other so, on ok days, I can at least enjoy some nature even if I m walking like a 90 yr old. The 3 peaks was a way of proving to myself that I could do something so esteemed as well as see something amazing. I was looking forward to the challenge.

Regarding the cfs and whether I can get back my life through challenging the mental impact of the accident, I'm not sure. The symptoms change and its hard to know how far it has to go before you no longer spring back. I know from research that neuro neurobiological changes exist in both ptsd and cfs. Whether these changes could improve through more therapy is something I've yet o discover. I'm hoping to have confidence building car lessons to get me back into driving and hope these reduce some of that stress. Today I have cfs pretend flu because I went for lunch with a friend yesterday.

Its hard to allow myself to say'ok, yesterday was worth today's symptoms' because, I only went for lunch. But, I forget I made dinner later. Today is another rest day here.how Is your day? Do you manage to read alot?

B

hi Beverley.  wow, you're lucky to have such beauty on your doorstep. ingleborough, peny y gent etc. are such beautiful areas of the country. you never know,  research may come up with  the magic cure some day soon & u could find yourself up there on those wonderful peaks again looking down on the world  below.

Yes, i understand the changes in neurobiological terms in respect of PTSD etc, but we musn't forget the  plasticity of the brain either and the body's ability to self-heal given the right resources & environment. ' 'hope', in itself can positively impact the brain's abaility to heal too.

btw, i  had to giggle at the idea of u going out for  lunch and forgetting later??  it's so ME/CFS ???  hope u have caught up on the energy expended by now.

i'm not doing much reading or indeed anything else @  the moment as i'm going through a prolonged 'rough' patch with new symptoms.  think i may have  'diabetes' (type2)  or am in a pre-diabetic stage on top of all the other stuff. feel so permantly exhausted these days.  need to pay a visit to my GP. guess, it'll take for ever to get an appoinment ...i keep putting it off as it leaves me so exhausted & it  takes ages to get back to baseline energy levels afterwards.  ah well..............que sera..sera........

Hi Caitlin,

I dont live that close to the peaks but it is beautiful where I am and am glad I can still enjoy the outdoors to a degree tho not nots much as before.

I am still recovering from lunch with friend thus, am resting and hope to improve to go visit my mum and pick up exam results thurs. Madly, I enrolled on maths gcse last year as I had wanted to go into teaching. It was was not easy to keep attending and had the foggy brain and slurry speech often thinking my class mates must think me drunk! But, persevered and sat the exams. Took a good few days to recover. So will carry on resting so am ok for that.

Sorry to hear about this patch you're going through. I know doing things when knowing you'll get payback Is difficult but, needs must so often. Can you have telephone appointments? We can here. Saves going to see doc. Also, my diabetes test came back high glucose which scared me. I was drinking alot of hot chocolate and cut It right down. No Idea If it helped but, when had the text was not diabetic. Its hard to eat ok with cfs/me. This year my weight has gone up and not exercising means those excess calories are going nowhere. Its hard hard not to loose heart but, remember there Is hope. Our minds can heal and that fear Is a powerful thing but can cane overcome. In low energy times its hard to remember how we are when we aren't. I consider it a little like bi-polar. Hope we can both find our base lines soon.

Best wishes

B

hiya.  good to know, that  whilst not in the midst of the beauty of the yorkshire dales/vales, having access to, or/and being close to nature is always healing & therapeutic.  i remember doing the coast-to-coast walk some yrs ago & was spellbound by the beauty of the Yorkshire dales & vales. it's elemental beauty & the amazing  light left quite an impression on me.  i could have lingered for ever in the peace of the environment  &  the the magic of the skies & the  light.

interesting that your diabetes test came back 'high glucose'.  think with ME/CFS, so   many of the systems are frequently & easily   thrown out of zinc & left  susceptible to whatever's going on in the environment. ME/CFS is  such an unforgiving condition.  

gosh, i'm impressed @ your courage at doing the GCSE maths  with the foggy brain and slurred voice.  that shows great resources & tenacity.  hope u got the grade u expect.  will there be a celebration on the calendar? have u plans to do some more GCSE's in the near future?  it's always uplifting  to have a manageable  project on the go -  gives meaning, structure & encouragement to the day/week? hope u have now recovered your baseline energy.  btw, do u have sensitivities to some foods?

C

Hi Caitlin,

Its lovely round here, semi rural and there' s the penine way just up the hill. You sound quite a walker! I had wondered about doing coast to coast walk eventually. Lots of youth hostels along the way. Funnily enough my partner when I had the crash had just done this. Even funnier was that he dumped me the day after the crash! Luckily, I found It funny at the time, all my friends were gobsmacked. We had only been together a few months. I really fancied the whole getting to robinhoods bay and having a drink In the wainrights pub there to complete the experience. You seem to have fantastic visual memory of your walking.

I wonder how much of the coast to coast s wheel chair accessible?

Food wise, yes I'm intolerant to wheat and dairy and vegetarian (by choice) I also have a reaction to carpet cleaner where I have breathing trouble. How about you? Are you sensitive? I was ok till I was 26 then started reacting to milk then wheat as well. Am used to it now though.

I'm not recovered yet from the holiday or lunch with friend however, am supporting friend with cfs/me today at a meeting with her work.

Hope you're feeling ok today, weather so changeable here.

B

Also, in regards the study, I'm hoping to undertake a short level 3 course in education and training. I've yet to see how that will impact on me but, if it proves too much I can always leave It. I used to try my uptmost to keep the day free before maths so, I'll try this approach again. It wasn't easy but, its good for me to have a focus.

B

wheel-chair access on the coast-to-coast.....now that visual had me in stitches.............wonder what kind of tyres Wainwright might advocate for that trail??

i must say that the Coast-to-Coast is certainly one of my most 'memorable' hikes, and that includes the Nepalese trecks. there was something  mermising about the light/skies/clouds & scenery of the dales & moors. it had a 'transendant' feel to  it. one could almost merge  with  the elements.  perhaps it's all the history up there, together with the Bronte writings & the Lakeland poets that highten the senses & magnify the beauty to linger long afterwards...getting carried away now? 

plsd. to hear ur in a nice spot. it's great to have the best of both worlds  the rural n urban, especially when life's been so mean.  it must be lovely, but also tantalizing  having the Pennine Way over the hill from you - apparently it's Britian's best known & toughest trail. u can still have a day out @ Robin Hood's bay & a drink @ Wainwright's pub before the summer's out - weather/energy permitting of course.   sry to hear your chappie took to the hills after the accident. guess, it's  better to know earlier than later -  a good test of his staying power eh?

hope the 'work' meeting went well  for u both to-day?  you're very courageous & generous to give your friend  such support when ur having a tough time yourself. advocacy work can take a lot out of the 'energy kitty'?

yes, i have multiple food sensitivities - the usual culprits wheat/dairy/fructose etc. the latter sets off my IBS, so i have a very limited dietary range.  so very tedious? 

Caitlin

Hi Caitlin,

Being carless at the moment means a trip to robinhoods bay would probably kill me by public transport! I had hoped to get to Whitby this year as I love it there.

I think I wasn't thinking straight yesterday about how bad i may feel after the meeting. I knew she needed me there and that took presidence. It was bout an hour and by the end I was flagging. It was to look at whether or not she's in a position to return to work, which she isn't. I'm there as a spare pair of ears and voice to the condition we both share. For instance yesterday she looked better than at the last meeting so I fed that back whilst including that last week she spent days in bed. so, yes-useful for her but not for me! she did however give me the number of a support worker that maybe able to help me-when I remember/have energy I'll chase it up. She also reminded me to join the me association. My memory is so terrible sometimes now.

it sounds like you really loved your walking Caitlin and I can appreciate how difficult this condition must feel for someone whose being loves being 'out there' its a tough call. I was invited to India and as it dawned on me the amount of travelling involved and then that the party of two (which I believed I could handle) swelled to a party of five, I knew that my dream will have to be postponed maybe never. Brighton at Christmas was too much and Edinburgh in February was too. Both by train so by plane-I can only imagine the payback!

How long have you had the food sensitivity? It adds to the being different but also is seen as better for the system? I've discovered an amazing wheat and dairy free chocolate cake that is sooooo rich but gorgeous too! Cooking was always my 'thing' at Easter I made a family Indian meal that had 9 different dishes that I was proud of. It took me a couple of days and help from the freezer. 11 people there and I'm so pleased I managed It but was wiped out after for a couple of days too. At present doubt I'd manage it. Can you lift things ok? Plates are too heavy these days for me. I hope to get that strength back.

What are you still able to do on a good day? I know were both limited. What Would you love to do? Its semi sunny here. I have to go out later so am in bed till then. Have a maybe cold. I say maybe as impossible to tell with cfs/me! Am sneezing but that could be reaction to friends house yesterday.

B

hi Bev.  hope ur recovering well from yesterday's outing?  hope too, ur friend got the desired response from the work place.  it's so difficult with this condition as we fluctate so much.   nothing's consistent with us, except 'payback' when we do a little over the standard amount of physical/mental activity. guess, it would be the same with the travelling whether by plane or public transport - payback would be as sure as taxes? btw, where were u going to visit in India?  don't give up on your dream - we never know how things  might  pan out with this illness.  the magic cure maybe around the corner.  

now, i am impressed at your cooking skills - an Indian for 9 is NO mean feat when one's well, nevermind when one's ill. do u cook veggie for the family when u do this? and  do u have a particular type of Indian that u favor?  Indian  is my favorite food, but since ME/CFS my system can't do the spices/oils etc.. v. well.  btw, i'm a hopeless cook - love food but hate cooking. i consider it a creative skill that one possesses or don't.  i watch the occassional  cooking programs on TV and am always amazed at the natural skills involved & @ what ppl turn out. 

at the moment, on a good day, i can only manage the bare necessities micrwave cooking, tidying up & that's about it.  been feeling like this for some time now. have had a few repeated infections that knocked me out.

just saw ur note on the 'education & training' course.  when does it start & how many contact hours is required.  it sounds a v.  interesting course - do u know what the modules are as yet?

C

Hi Caitlin,

Still recovering but, have rested lots and went for interview for the course today. It looks at roles and responsiblities and relationships in education, 3 units altogether, a micro lesson to prepare and deliver and I think 3 essays. 3 hours a week taught hours. I explained my condition and why I didn't feel a pgce was for me this year due to the need for a placement and academic working at the same time. This course will Keep my mind working. We also looked at how the tutor could help me with the nature of cfs being as it is. Felt ok and funnily I felt ok for a couple of hours too which was good. Rested last few hours. Go to pick up gcse result tomorrow so hope to have energy to get to the college ok. Also, friend gets their results too and we're meeting for a meal no matter what the result!

Yes veggie for everyone when I cook! Been veggie since a teen and love cooking, whether that Is the key or not to cooking well, i'm not sure. I tend to do a range of different Indian dishes, lentil, vegetables, mushroom, pulses,potatoes, quorn. i tend to make the quorn a korma as it lends itself well to the flavours. I itch If I have too much chilli but am ok If don't have them for a few days. Sorry to hear your diet Is even more limited than mine. Cfs and good nutrition seems to be really important. But hard to maintain. I like thai food too, I like different colours and textures. Easy cfs bad day food for me is instant rice noodles with braised tofu. Two min cook. Its hard to cook well with no energy and I can't lift things like shopping so, I rely on others and then I forget things that are good for me. Chopping veg can be an issue too, is that an issue for you too? I find housework hard and manage washing and washing up ok and that's about It regularly. I find cfs really challenges your core beliefs. I kept on top of housework before.

Re India, I'm just going to let It go for now. I'm going to attempt Paris first as short flight etc hoping next year now, thinking October maybe. Will need some preparation I feel! Have you been away since your diagnoses?

Are you currently spending alot of time resting too? I'm sure last year I had a good couple of days together at a time but was doing more physically? This year, I'm finding I am getting less good whole days yet i feel I'm being less pushy with myself physically.

B

Hi Bev.  hope you're winning the energy 'payback' contest with adequate amounts of rest? your course interview  seems to have gone well.  it's great they recognise/acknowledge the potential need  for adaptation to your energy levels etc.  it's always uplifting when someone (in authority) acknowledge the challenges that ME/CFS present.

the course  content sounds interesting too. the pgce alternative is quite academically & energetically challengiing, so best ease yourself into  study practice with a bit size  more manageable taster course. however,  with just 3 contact hours, i'd imagine the home work will be quite demanding.    you'll be able to pace yourself @ home though  and possibly to get extra time if required. hope the gcse results  were as expected and that the celbratory meal is/was enjoyable. it's been a busy time all round for you.

i've been having a quite time.  there's lots to be done around the house but it's all getting the 'back burner' treatment. interesting that you say that you're energy seems lower when u do less. i've found that   it's really difficult to guage and maintain a steady energy/avtivity level. with this low pressure 'dark' weather, i feel my energy levels disipate so quickly.  i don't like the dark evenings???

C

Hi Caitlin,

I'm looking forward to the course and hope I'm able to get to the end ok. I was happy to get a B In the gcse, infact-given how my brain was functioning and that I ran out of time on both papers, I'm pretty pleased. As my friend said, it felt harder than our degree! I am proud of my commitment even though sometimes I thought I was mad for continuing. It was good to see some people from the course who had passed too. I had a good meal and some drinks. I don't feel any worse with alcohol which I'm not sureif thats good or bad? Either way i Am like a beached whale today . Sorry to hear that darker nights are not good for you. I actually like autumn and winter better but haven't really noticed a difference for myself.

Have you heard of the caravan photographer? He has an exhibition near here. I ve seen it once already but popped in again on way home. Fantastic in his stark and mostly amusing portral of life. I picked up some of his postcards.

Hope your day has gone ok

B

Big CONGRATULATIONS to u.  getting a 'B' under normal circumstances is great, but getting it with PTSD/ME/CFS is quite an avchievement. well done u.  i'd be well pleased if i were u. and yes your commitment is commendable, coz it's so easy to give up or give in when struggling on all cylinders.

plsd. to hear you had a nice time afterwards too. so enjoy your legit  'beached whale' status. you're lucky that alcohol doesn't affect you.  it's nice to 'escape' from the  full time   body/mind encarceration that is ME/CFS.  i have the usual intollerance that many ME/CFS ppl have, but had low tolerance even when healthy -  a half glass of wine &  i was giggling @ everything/anything? now, it just knocks me out & have after effects for ages. i don't get the giggly feeling anymore.

yes, i have come across the 'caravan artists' if they are the same ppl.  they use a mobile  mustard & off white colored caravan for their photographic exhibitions.  they have some AMAZING pics on line - the absolute in irony.  very british -  i love it. 

have an appointment with Doc early..............absolutely hate going to the Docs, but needs must and all that. .................?

C

 

Hi Caitlin,

Thankyou I really am pretty plsd with myself although am in a restful faze again now and its hard to lock Into those positive emotions as well. Not feeling gloomy or anything, more just 'numb'?

Ye that's the caravan photography guys, some fantastic imagery!

Thankyou re my beached whale affect.yes, am allowed the odd indulgence. Re the drink, its odd. It switches off the symptoms temporarily and I 've even managed to dance! I have fallen over more though. The after effects are just a usual bad cfs/me day and as I have mostly them at present, I cant see a difference. My friend, like you became worse with wine. She had pvf prior to cfs, maybe that makes a difference? but she can read and I can't so well now. Its as if you get one cfs 'superpower'! (Or something you could do before that's not as affected) what's yours if I'm right?

Glad you managed to get doctors appointment, even if so early. I try to have someone with me, even If they don't go in the room with, just feeling supported helps? Don't know if you have people near you who could or you'd want? I tried to make app to see consultant yesterday but the machine wouldn't let the receptionist. She said ring back monday, I said If I remember cos thats part of my problem! We don't live n a world geared up for cfs/me at all. Feel That's part of the Issue. Anyway, How did the app go? Hope it felt positive?

B

Hi Bev.  how's the resting coming along?  i'd imagine the 'numbing' is short term, albeit uncomfortable.  i'd consider it's the body's way of self  preservation  i.e. a kind of shut down of the non emergency systems allowing the  body time  to recover it's energy. i hope it's not too uncomforatble for u.  do u see a pattern of symptoms emerging when you go beyond your normal day-to-day energy expenditure. btw, when does your course commence?

yes, the caravan artists have an amazing eye for 'raw realism'.  their work's incredibly engaging & evocative. it's quite amazing. so much can be relayed by the visual sense that could not be so effectively conveyed in words.   a friend of mine who lives in Cardiff commented that they 'caravan artists' were coming to Cardiff city & she and her husband were hoping to see the exhibition.  she's away @ the moment, so i don't know if she's been or not. 

well, eventually the heaven's opened here this evening - the monsoon showers cleared the air somewhat, so it's not so oppressive presently, but remains v. humid.

yes, i eventually got seeing Doc to-day.  i should have gone weeks ago - kept putting it off.  she's started me on Anti-B's straight away. i normally respond well to  homeopathy & colloidal silver for  infections, but this has been such a  stubborn infection  that it needs Antis??  hope these work?

have u lined up any interesting DVD's or good reads for your 'rest & recouperation' period?  hope u begin to recover your baseline wellness soon without too much discomfort.

C

Hi Caitlin,

I've just been laid in bed again resting with it and the odd google on my phone. Not been up to a dvd today. Not good but now I'm not quite as numb (mind wise) I went out to meet friend to get some shopping and that was physically hard. Needed a sit down halfway!

Hope the anti-b's help. Has it been an illness that has had you knocked? Do you keep a diary to see what affects you? I keep a diary but It only looks at how my energy is per day.

I'd like to be able to do a photography project, I love colours and texture in things and nature but also stark reality too.

Hope the change in the weather helps you, it feels fresher here.

B

i guess 'rest' is the only thing that allows the body to generate 'cellular energy' to fuel the body & it's needs.  it sounds that you have utilized your reserves & with ME/CFS the cells take so much longer to genertate & replace energy. hope, at least you had a good evening meal, that should help the recovery. 

maybe you could do something on photography for the 'mini teach' session for your course. i think, they are very open minded about the subject matter one chooses.  the main idea being, that u can demonstrate  your 'communication' skills, through a variety of media/senses.  you could start thinking/researching straight away.  do u have a good camera?

i love color & texture too, but mostly in materials & design. i love wacky design - mixed textures - mixed media - complementary & contasting.

re: AntiB's. it's just i've had a recurring infection that's gone on for months & i think its part of the reason that i've been feeling low for some time. hopefully the Antis will do the job. do u use any kind of alternative therapies for yor symptoms?

C

 

Hi Caitlin,

I get so frustrated with the energy roller coaster that we're on. I understand the science of what happens down to cell level but, it doesn't stop the brain playing tricks by thinking I can do things I cant. or the body fooling the mind. Its soo frustrating! Just went out for short walk and got back before it rained-was amazing.

I may think about the photo project. How

This is my 3rd attempt at finishing this message today! Technology! The rain earlier was amazing here and put my feet out of the door to let the rain drip on them. I don't have a garden-just pots, and it made the lavender smell fantastic.

Managed you tube today and watched riff-raff, ken loach. Silly and serious. Last night watched raining stones by him so bit of a theme going on.

Was wondering if you still worked if so, how do you work around it and if not, what did you do before?

I over did it making dinner tonight and so am resting again. Hope you managed to have a good day and hopefully the anti b's kick In. I used to to use alternative therapies but haven't with the cfs/me. Just b vitamins. Want to start going swimming again and/or yoga soon. Felt sometimes a bit better afterwards. No massive swim and by now I'll probably be back to 10 mins max!

B

hi Bev.  so sorry to hear you're having such a roller coaster energy phase.  yes, it's horrible, one never knows from one hour to the next how they're going to be.  it's so difficult  to plan anything or remain consistent in committments whether social or professional.  

however, pacing is so important to keep some  kind of energy balance & reserve. it's  also important  to allow the body time to recover energy & repair after short episodes  of activity whether mental or physical. in a way it's about learning how to be kind to oneself, which for ME'rs, can  generally speaking, be a difficult task.

when i first got ME/CFS, i found pacing myself the most  difficult thing to do.   once i felt  some  energy return, i just got back to action.  i was completely impatient, hated being 'grounded' and did the mind over matter approach i.e. if  i can ignore this fatigue and work through it, it'll go away. in short,  i felt it was just a matter of training my mind to ignore my body.  however,  i only did my body an enormous amount of damage. i guess, i was used to pushing  my  body through the pain threshold with all the outdoor & other  pursuits i engaged in. with hindsight,  i'd manage the ME/CFS in it's early stages much differently now.

 however, as you've probably learned, the knowledge of how to best  manage ME/CFS is a relatively recent phenomenon. and coz of it's individual expression, it differs so much from person to person, the info. available isn't always applicable to everyone.  there's lots of confusing & conflicting info/advice out there which doesn't help things.  there's also the problem of 'low priority' from the health care system i.e. cuts. research funding is sparse and the fact it takes over 20 yrs for research findings to be implemented @ primary health care level mitigates against optimal results. 

no, i'm not working presently.  i did the revolving doors with work for some time (self-empolyed)  untill it became unsustainable.  i had longer & longer periods of being house/bed bound.  for example, after my jaunt to the Docs yesterday, the remainder of yesteday, all of  to-day & probably the nest couple of days will be bed days apart from microwave dinners lol.

u must have had a similar downpour up ur way to-day.  it deluged here  too.  not much of a summer for the school kids, unless they've been able to jet to warmer climes for their holidays.

C

Hi LTS.  been wondering how things have been for u?  hope that rough  patch passed for u now.  hope too,  the job center is now off your back?  it's soooooooo  difficult keeping one's head above water without the DWP making things  worse  for us.

Caitlin

Hi Caitlin,

I think we're on a similar cycle activity rest wise. Travel totally wipes me these days and I have some friends and family who don't get it still. Its hard. Recently I was 'guilt-tripped' for not attending a family bbq (I don't like them them anyway) I wasn't up to it after the mini holiday. Because I went to see my friend the next day, I was told'funny you have enough engy to see you're friends' a massive ouch to the thestem

(Technology!) System I was writing before it sent!

I too was self employed as well as working at the local college beforehand but, due to the physical aspects of the crash, there was no way I could return straight away and that didn't change. I'm optimistic optimistic things will change someday. I loved my job but it s psychological and the mental fatigue, slurring etc means I cannot do it presently.

I loved the rain yesterday. It was bouncing off the roofs.

I hope that this rest period refreshes you a little. I'm phoning gateway to care today to see if I can get help with a cleaner as my pride finally takes a back seat ;-)

What are your plans today?

B

Hi Bev. yes, indeed ME/CFS is a vicous cycle of exhaustion & false promise. think u did yourself a favor by avoiding the bbq.  the smell alone  would have me gagging.  being a vegan/veggie from teens & a life long animal lover, i call  bbq's  the  'summer  creamations season'  lol? 

i think ppl who have not personally experienced ME/CFS can only have a cognitive  'concept' of the level/depth of exhaustion involved  rather than an 'experiential' understanding of the subject. they don't understand how changeable the symptoms can be & how affected by the environment we can be.  i have given up trying to explain. I  just do a brief  'take it or leave it' approach.  it doesn't always endear me to the listener, but que sera, sera.  in respect of 'guilt tripping', i tend to ignore it & once ppl realize you're not taking the 'guilt' bait, there's nothing in it for them so they get bored or/and stop trying. 

remaining optimistic is v.  important and having small measurable goals (like your doing) is key to keeping in social & professional contact. each  can help us  feel that we are still contributing to society in our own small way. in turn, this helps  with self-esteem, keeping skilled. it can also  gives some  meaning/purpose/direction to life whilst the body's doing it's  healing bit.......hopefully.

do u have the option of returning to the college (part-time)  if u feel up to it?  part of the side-effecst of ME/CFS is that whilst it robs us of almost everything, we still have to strive to survive.   we can become invisible so readily if we don't make that mammoth effort.  

i haven't heard of the 'gateway to care' facility.  is it a national program ? can anyone access it? i ask coz, i'm frequently overwhelmed by the house work. presntly i'm on my last clean dish lol?

yes, i watched the vertical downpour yesterday. i recogned that each raindrop must have contained at least 10 mls of water???   it reminded me of when i worked over seas (relief & development).  when the monsoons arrived, i used to stand out in the first showers & let the down pour cleanse the body & soul.  it was heavenly after all the intense, heat humidity & dust.  it was  like having a heat  powered  shower under  pressure.  the smell was wonderful.  the raindrops were so big that they actually hurt one's head.  the kids used to come round to add their special 'group spalshing' effects and run off laughing having achieved it.  fun times minus ME. it's still raining here.  it's been a wet august so far. maybe Sept. will be clearer. 

C

 

Hi Caitlin,

Absolutely re cfs/me, no one quite gets it unless they have/have had it. There's no template for them to work from. Most people just want you to be well because because its less effort for them. As If they'll catch it If you talk about / think about it for too long? Like depression, it can be catch 22, people to talk to is helpful But, when they feel unable to deal with that and stop being around it adds to the despair of the illness.

Re the bbq, I don't do them usually and had said this but, my confidence/esteem etc has dropped with this condition and I didn't see the 'game' that was beginning where I had to defend my self and i evn felt i had to prove myself to not have to go. Madness! People don't like it when I say I don't like the smell of dead animals being cooked, but that's what it is.

I love dancing In

I love dancing in the rain and can imagine how fantastic the monsoons would be. I live In a flood area and although there's the risk of damage to property, being out there with the force of water has been fantastic in past years. Its sunny here and I've put out some washing. I wonder if there is somewhere we could go o rest till we got our baselines? If then we could start to add things then? Gateway to care Is across the country I believe. It wasn't as helpful as I hoped but, they have list of cleaners they approve that you have to pay for.

Are you feeling any better with the anti-bs yet? I usually feel worse initially. I have to take them in liquid form as tablets have lactose.

B

from what u say, i think  you'd love the monsoon.  it can be magical   when  preceeded by the  thunder & lightening electric storms.  the lightening can be spectacular. in an instant, it  lights up the sky & the whole landscape. one cane see  for miles around.  keep your dream alive and there will come a time when u will dance in the monsoon in real time? 

yes indeed, one's very much on their own with this condition as few understand it's  wide ranging ramifications.  have to agree with you re ppl's attitude to ppl with ME/CFS. I think some of it's due  to  the selfish society  we've grown.  we seem to have  lost the  art  of  listening & the healing power of  being fully present with another. i think there's an enormous amount of unresolved grief/sadness attached to getting ME/CFS - the loss of one's planned career, aspirations, social/professional life, the loss of a family life for some and the loss of friends or ppl whom u thought were friends. it's truly one of those conditions that makes one reflect & evaluate all aspects of life @ a much deeper level.   

finding baseline energy levels can  be a difficult task, but worth the effort when it's  possible.   the body has it's own invisible rhythms, that we're not always consciously privy to, as well as it's visible ones.  sometimes we feel there's energy available only to suffer the concenquences of acting on that feeling.  sorry to hear re the  'gateway' dissappoinment. 

re: Antis.  i'm not feeling much better.  the symptoms have improved a little, but i feel quite toxic with the Antis.. i'm half way through the course & should by now, be experiencing relief. i'm having bloods  done later in the week. perhaps that'll show up something useful, that can be addressed. it's such a pain (literally) being ill lol?  hope ur having a better day?

C

The monsoons do sound amazing. I love the fact the weather can change so dramatically. Its power can be awesome or frightening

Regarding peoples attitudes to this condition, as well as others, I feel people seem scared. Scared to ask,hear,feel-touch It. They find emotions difficult, the right words difficult-so hide from It by either being over positive or by trying to'normalize' it by saying things like"I get tired too" or running away completely. There is a huge stiff upper lip mentality that still exists here "keep calm and carry on"

Its a busy day here for me and feeling it a bit already. Least It s sunny, is it ith you? What does today hold for you?

B

Hi Caitlin,

Hope things aren't too bad and that getting the further tests done this week hasn't taken it out of you? Its turned out to be a heavy couple of days here.

I hope for a gentle weekend for us both.

Best wishes

B

Hi Beverley.  lovely to hear u.  hope you're getting organised for a restful long & sunny weekend. the weather's is better here - some sunshine - some clouds.  hope you've got more of the former up your way.  just had some 'investigative' bloods done. i await the results. 

Hi Caitlin,

Hope the test show no surprises for you and that the app doesn't take it out of you. I still await my consultation with the neurology dept because the secretary wouldn't allow me a direct app and said I had to go through gp? Gp receptionist said that that was ridiculous, all strange to me. I don't have the extra needed to deal with all that!

Today has been lovely here, sun with a breeze. I've managed to walk to the library and town, had a soya hot chocolate (btw, did you know you can get mainstream almond milk Ice cream-I've not tried it but seems Interesting) looked around and bought some things-I didn't carry. Got an original mastermind game (dont know if you remember it) Resting again but feel much better than yesterday which wasn't a good day. How are you feeling now? Have the anti-b's helped? Hope you are also ready for a nice weekend, it seems we're certain of good weather from what I hear.

B

Hi Beverley.  hope ur having a good week-end. and hope the weather's obliging up ur way too.  it's v. mixed down here, certainly more clouds/rain than sunshine. none of the latter to-day.

do u know how long  the Neuro waiting list is  likely to be for u? are the neuro symptoms v. limiting?  must say 'logic'  isn't a strength in the NHS's appt's.  system or indeed generally speaking in the way the system runs. alot of time & money is  wasted  by the use of the convuluted systems they put in place. 

hey, i had no idea one could get 'mainstream' almond ice cream. where did u see it........ Sainsburys/Asda???? i'll be on the look out for that. i know about the mastermind games, but have never played them - not much of board game person. how are u getting on with it? it's a good means of engaging the brain & having company @ the same time. reading anything interesting presently?

plsd. to hear you're having some energy  'respite' moments intersperced with the other. can u  tie the 'down energy' episodes to any particular reason/cause i.e mental/physical activity , environmental or dietary factors?

the AntiB's are helping me, but not clearing the ? infection.  should have blood test results on Tuesday.  they MAY throw somelight on things. however,  i think, i know what's going on so am just learning to manage  it right now.

C

H Caitlin,

Hope you're having a good bank holiday weekend too. Went on awalk locally yesterday. Took it slowly and had a couple of rests so not feeling worse than the usual fatigue stuff. Its hard not to do things and I just needed the change of scenery. Have you managed to get out anywhere? I'm going to Whitby tomorrow, I'd said I'd do this ages ago. So am resting at present.

I'm not sure re the waiting time for neurology app. The consultant said even if they find the cause of the problem, they probably won't be able to do anything! There is alot of time and money wasted in nhs sadly. Its not too bad syptomwise just, like the c.f.s/me, what if it gets worse is the worry. I m no longer ticklish at my sides is the lesser of the symptoms which is easy to live with. The other stuff, I'l have to see. What are you guessing the blood tests will reveal?

I've not played the master mind just yet-but am looking forward to it as its the original, such nostalgia. Bookwise, I just finished Laurie penny's-unspeakable things. Interesting although some aspects I didn't agree with her. How about you reading wise? Watched "the girl who walks alone at night" last night. An Iranian film. Quite unusual. In black and white.

Re the icecream-its waitrose i was informed. We don't have one here so can't tell you what its like. I fancy trying it if I get a chance.

The weather's been a bit disappointng here given the good forecast we had. A fantastic sunset yesterday though which was spectacular to be able to see.

Hope that the blood tests and anti-bs help sort out this health issue for you. Let me know how it goes. Regarding my energy, I haven't truly pinpointed Any factors as yet. Just know when I felt some clarity last week I'd had two soya hot chocolates! Doesnt usually make a difference? Seems no pattern at all sometimes.

B

Hiya. lovely to hear you've been able to have a little outside walk. it's great to get out in the fresh air, experience  the elements  and feel one's part of the human tribe occasionaly. hope there's no delayed 'payback' for u. sry. to hear the  weather didn't oblige.  same down here - just rain & more rain & pregnant clouds as far as the eye can see. however, about an half hour ago, there was a beautiful uniterrupted rainbow.......it was rather lovely.  think we're supposed to have a 'super moon' in Sept too. 

congrats. on the  completion of 'Penny Red's'  'unspeakable things'.  she's quite  a lass.  my ex used to refer to her as 'the red tornado'. she's got her finger on the pulse on most things but she's had so many different 'incarnations', that i sometimes  think  what's next......or wonder if she says/does some  stuff primarily  for the shock factor  effect?  she's a courageous/fearless  woman &  i wouldn't want to be her enemy?

i'm only up to chit-lits reads @ the moment if that. i've been trying to get started on one for the past week but keep having to put it down - (focus/energy problems) it's called ''After the Fall' - by Charity Norman.

hope to have enough energy to watch ''Danny & the Human Zoo'' on BBC1 - tonight. it sounds promising.  i love Lenny Henry. 

must off.  hope u have a great time @ Whitby tomorrow. hope too the weather picks up. it'll be therapeutic to be with sea for while. 

C.

p.s.

re: bloods etc.  my GP is just ticking the boxes (covering her back) seems the way these days.  i suspect, she'll do a 'fasting blood sugar' next as i have 'out of the blue' sugar cravings & suspect high blood sugar levels. the symptoms, however, point to IC. 

 

Hi Caitlin,

I wrote a really long reply and the site bounced me to another page and deleted it all! Sadly, not got the energy to rewrite it all . So:

fantastic about the rainbow, lovely and I find them magical.

Reading is hard for me also energy wise. Took ages to read unspeakable things. Don't know chit lits-guessing short text?

I dont have t.v. not had for over25 yrs. Watch dvd's and youtube etc. Let me know If its worth watching danny and the human zoo? Can pos get on iplayer.

Hope I get some recovery power from from the seaside too.

Can IC be be treated? It seems there's a link with cfs? Hope It doesn't cause you alot of pain.

Let me know how you get n with the docs, sometimes it can feel like ts one thing after another with this. Be good you.

B

Hi Beverley.  hope u keep well. my system didn't alert me to your msg., so apologies for delay. sry the system chewed up your previous script.  it's so annoying when that happens, particularly, coz  it takes sooooo much energy/effort to write with this condition.

delighted to hear u had what seems a rejuvinating day @ the sea side. hopefully there won't be 'payback' .  fingers x on that one.  what was the weather like & did u have any of  those wonderful fish & chips on the front?

i'm really surprised to hear  that u don't have a  TV?  i only got one a couple of yrs ago as this condition confined me more & a friend gave me her 14'' collectors item.  it was playing up last year and as  i like the odd 'subtitled' art house type movie, i got a 19''.  it doubles up for 'digital radio' which is great. 

re: ' the human zoo': yes, i felt  it was worth watching. however,  it made me feel really  sad - tears sad.  i didn't realize that  Lenny Henry had such a tough early life. it portrayed him as an extremely  sensitve, deep & complex outsider.  think it over did the  'stereotyping', some of which i felt was a bit gratutious &   detracted from the overall  impact. if u do watch it , i'd love to hear what u think.

re: reading, same here, very demanding on the brain's finite energy levels. i can imagine how challenging 'unspeakable things' was, as she's such a cerebral lass. however, i do love radicals. 

chit-lit should have read 'chick -lit', a ficton genre  which addresses issues of modern womanhood, often humorously and lightheartedly.   for me they are  an easy read. i love  'psychological thrillers'.  recently read an excellent one - 'Cafe Assassin' by Michael Stewart.

re: Docs. yes high glucose levels.  need to have a 'fasting blood  sugar'? very high folate levels too - not sure why as it was low a few months ago and i supplemented minimally, but thyroid has settled down. IC is, as far as  i've read on the various forums, quite common in ppl with ME/CFS. it's an auto-immune condition. it tends to occur in ppl with IBS & other auto-immune conditions. it seems that my body  gets a kick from eating it-self up?  

best C.

 

Hi Caitlin,

Yes, most frustrating with the messaging! Think its because its on a small screened phone and it has advertising that is really sensitive if you touch it and if you accidentally touch the surrounding page It seems to bounce to somewhere else too!

Tv wise I own one now, just don't connect to the channels. I still get letters from tv licencing and still phone them saying I still don't need a license! I still have videos and a video player as well as Dvds.

Reading I used to love and was taken from me after the accident. I realized I'd read a few pages and had no Idea what I'd read. Now it just seems more exhausting. I have a friend with cfs/me who can read and type huge amounts which I wish i was more able to do but, they get breath less and chest pains when speaking instead so if I had the choice, I'd rather the reading was the issue!

I noticed IC had link with cfs/me too as well as ibs. I got ibs after accident too, what a set of consolation prizes I got : )

Regarding the high sugar and fasting blood test. I was drinking a lot of hot chocolate when I got my high glucose result so stopped drinking it before the fasting test and that one came back ok. I think our bodies just process differently with this condition.

The seaside was good and chips were Indeed eaten and enjoyed. Walked up to the Abbey too. Yes, I did the steps! Am ok presently by which I mean I am resting in a darkened room but, not as bad as after the lakes where I had some very miserable time. The moon was fantastic too! ! Orange and surrounded by cloud. I was n Whitby when we had the supermoon was it 2011? It was huge and Orange then. I got back last night and am really hoping the sea air helped as when I was there I didn't feel as foggy headed which was nice, had other stuff but was able to feel slightly better just for that.

I'll check out the lenny Henry when I get a chance as sounds Interesting and will let you know what I think.

if you could do anything you liked today, what would you choose to do? No health issues, no planning around cfs/me, just something you wanted?

B

Hi Beverley. just wrote u a long ramble and the system chewed it up.......YIKES......................perhaps it's technolgy grimlins day?? glad ur well. 

connect later

C 

 

Hi B. hope it's ok to abbreviate. yes, it seems, it's tech gremlins day big time. 

so now that you've had a relatively  'payback free' day out so far,   when/where's your next plan to? it's must be horrible having to stay in the darkened room bit. btw, can u use those techy  torches to read whilst in the dark or does that light affect u too. 

 you made me laugh with the ME/CFS consolation prizes -  some prizes? u mean 'crosses'? apart from' locked in syndrome' and MD, i think this is the worst disease one can have, coz all systems are affected, few  understands it's limitations unless they've had it and many don't believe the presence of the  'invisible' assassin........ aaaaaaaaaaaarg.

it feels that you have to watch the sugar input with the potential for  unstable blood sugar levels.  do u miss  the bed time cuppa chocolate  or the chocolate & ice creams?  do u get 'down' much with  coping with it all?  

re:  the  IC forum: i could only get an old one (a year old iapprox.) with not many posts.  most posts weren't relevant to my IC experience. however, whilst checking the treatments for IC, i came across  an interesting old treatment - silver nitrate. 

i had the equivalent in potentised homeopathic form & i took  it and bingo it did the trick.  i had struggled with the Antis (very toxic feeling) with only about a 25% reduction  in the pain/symptoms, and low & behold the homeopathic version delivered  about a 90% positive response so far. fingers crossed on that one. musn't get too cocky too soon??

re: the choice between loosing compromised reading ability & the chest pain/  breathlessness. i'd opt for loosing the reading too. the chest pain, i'm far too familar with. has ur friend got any support from the cardiology ppl. it's been a nightmare for me as the cardiologist don't seem up to date with the cardiac research done @ Newcastle uni by prof. Julia newton & her team.  they don't seem to be able to get their heads around it, especially if  u don't fit the cardiac  'profile'. the fact that the  the  standard cardiac test don't show up the anomolies really makes  it a very difficult aspect of ME/CFS. 

what helped me massively with the chest pain was the addition of b12 supplementation together with the sinatra protocol.  unfortunately i have developed an auto-immune response to the b12 (consolation prize - my bodies is big on auto-immune consolation), so i'm back with the chest pain and it's associated symptoms.  it's  not quite as severe as before, but it's getting worse. 

now, that i have rambled i  won't overwhelm u right now  with reading my fantasies about a ME/CFS free day out. i'll do that in another ramble.  how about u,  what would your perfect ME free day be like?

 

Aw, , it's so frustrating when that happens.

Catch you later

B

Hi B.  my repeated  long laboured  ramble has gone to the Big Bro editors......yikes...............guess, i mentioned a few remedies that big bro. doesn't approve of. they might publish it after it's been moderated. i'll wait and see. if not i'll do a  PM if that's OK?

so to the safe topic of what my perfect ME free day would look like.

firstly, a long walk or cycle (8 hrs ish/early start) along the Pembrokeshire coast, followed by a long soak in a sauna. then  a 4 course meal (possible an Indian thali) overlooking the sea whilst the sun sets. a vino @ home and finally the duck down duvet with possibly Lenny Henry,  hugh jackman or harrison ford or some other 'man/man'. i'm sure they'd be thrilled??? 

what about you?

C

 

Hi Caitlin,

Shame re your message, I think they were making alterations to the site earlier as it was acting strange when I went on but anyhow, Yes pm me that's fine.

Your ME free day sounds good apart from mine would be a decent walk possibly somewhere In the lake district, a nice picnic somewhere in the sunshine-not too hot! Before heading back. The sauna sounds good but I'd do the spa pool and steam room, followed by an indulgent massage. At the moment, I think It would be out for a Thai meal for me, a couple of cold beers watching the sun set over water with a beau sat beside me : )

I think i over did it a little today. Not too much just, can feel the edge of it. I've done rest and activities routine. Had to return dvds to library and was still late with one! Got a fine as presumed all back same day-c'est le vie! Its no more than 10 min walk.

There's a definite chill in the air here. Is there with you? Winter has always been my favourite season. My cfs/me free winter day would be different to my "if I woke up tomorrow" free day.

I've been invited to a boxing day family thing that I don't want to attend and don't feel I need to justify why but, its the same folks as the bbq! Its hard but i know Christmas day is going to be enough for me as it is, just, they'll be a 'guilt' tag attached if I don't go. People don't always get cfs, or near vegan and its nice they want me to be there just, is it worth my energy? I've already tried to offer a pub meal, I know it will be expensive but, means I have more control over events and my own condition.

how are you this evening?

B

hells bells - another msg has dissappeared, from the PM this time.  think ur right, it must be something to with the server or website maintenance or maybe it's my system. it's most annoying.  i'll give it another try.

C

Try writing it elsewhere (on word or something) and copy and paste as at least then you don't have to keep writing it out. Very annoying though.

Hi Caitlin,

The message came through : ) I have a beautiful plum/purple room with Moroccan type glass and metal shades. Silky plum curtains means I am enclosed in a lovely dimmed affect even with the lights on. someone plastered and painted it for me and its a little bit of heaven in this hell as It were. I only read when Ican so, when the lights are out I tend to be pretty comatose and need no sensory imput.

Re the hot choc-no way am I stopping my little indulgence. I eat so little sweet wise so hope it doesn't have too big an affect. Swedish glace Ice cream is soo good!

B