I'm not alone

Posted , 7 users are following.

It is nice to see I'm not alone. After 7 operations in 2 years and I've lost count how many blood tests. Depression, allergies ( I seem to be allergic to something new all the time)memory (I even forgot my sons birthday, I can't remember to take my tablets and I forget to eat and drink), legs so painful I can't bear my small cat to sit on them and the smallest crease in the sheet or my clothes hurts. total fatigue I never get to see the end of films even at the cinema I fall asleep, I can't go out alone anymore because I either fall or get lost and panic. I am 40 going on 90. I sleep for an hour or so then I am wide awake, I am either woken by pain or fluttering feelings in my muscles or it feels like my heart is jumping. I take sleeping tablets and prescribed painkillers. I get problems with my bowels, migraines, sore throats and my coordination has gone to pieces to. I am always picking up bugs and viruses, which is causing me to deteriorate rapidly. In less than 3 months even with the pacing program from my ME clinic, I have lost my independance and rely on my sons and daughter for most things i.e medication, food and going anywhere, which is depressing. I do get some good days, when I can get up and get in the bath (with my daughter on standby just incase I fall again) I can make my self a cuppa as long as I don't day dream and over fill the kettle and drop it in the sink. Do any of you find you have become weak and really clumsy. I used to be really good at maths but now I can't do the most simple sums.

The year before I started to get the first symptons I had flu really bad and a really bad cough, this was in 1997. I watched a program about a form of flu that can cause this sort of illness, did anyone else see it, it was on channel 4 about a year ago. My GP said I am down about as far as I can get, so may be I'll start to improve soon, here is hoping. I have searched the internet for all the cures, well here is what ive tried, dark chocolate ,2 tablespoons of coconut oil a day for a month, it made my hair shiny), cod liver oil, cider vinegar, eating various herbs and stinging nettles, I had been taking a capsule from the health shop called Tribulus Terrestris but my occupational therapist said to stop taking it until my pharmacist had checked it is ok to take with all the other medication I am taking. I had been taking it for about 2 weeks and it did seem to be making me feel a bit more with it and I did remember an event, which my family marked on the calender. Also I suffer with freezing feet and hands, they are evn cold in the summer, this also improved slightly, it also seemed to ease some of the muscle type pain in my legs to. I will let you know what my pharmacist has to say about Tribulus Terrestris.

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10 Replies

  • Posted

    Hi there Sue

    I'm so pleased you have found this forum - we are all in the same boat - so do keep in touch (we are a really nice bunch of folk smile ) and understand completely how you feel. We all have varying degrees of the illness and when you are feeling really down it's great to be able to let off steam:steam: on this forum - you can rant or rave as much as you like!! We are all very supportive of each other and share all the various ups and downs.

    I'm really sorry you have had the illness for so long and it sounds as if you are badly affected - but, hey, now you've found us things could well be on the up. smile You've probably read a few of our many postings - some serious, some funny, some emotional - it just doesn't matter - you can write just what you want and you can always be assured of a reply.

    You will find that other members of this forum will gradually introduce themselves - though it's going through a bit of a quiet spell at the moment as a couple are away.

    Look forward to hearing from you soon. I would be absolutely lost without this forum - it's such an isolating illness that few really understand - but you can be assurred that we certainly do!! smile

    Take care

    Katie smile

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  • Posted

    Hi there Sue, I am known on here as Alicia, but I get called all sorts. :roll:

    I cannot write much today as I had a terribly traumatic and upsetting day with a friend yesterday and I am sore and weak and drained and desperately in need of tlc .

    I will tell you all about it when I feel better, but glad to see you. Sorry you are feeling so unwell. x

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  • Posted

    hi sue im matt im 26 and have had my illness for two years!what you have wrote is how i feel on most days and got alsorts of other things going on on top of them!the past three months have been horrible for me but this site has helped me loads so all i can say is try and cope(as hard as that is)and just post on here any time you need to as we are all in the same boat!you need to make it clear to your family that your ill and thats that(which is hard to make them understand)and then buy yourself a tv recorder so you can plan out your telly viewing and record the shows that you like(helps for me lol)
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  • Posted

    Hi Sue,

    I go by the name of Dale. My ME seems milder than yours but still a drag!

    I am newly diagnosed and a newbee to this site. All I can say is I am glad I found it and you are in the right place for support :P

    Dale xxx

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  • Posted

    Hi Sue, My CFS name is Teedie - :D I am the same as Dale, newly diagnosed and have this condition quite mild compared to some of the others. Since joining this site I have had great support. These guys are great and it's not all doom and gloom sad .

    Keep your pecker up! :cuddle:

    Teedie x

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  • Posted

    Hi Everyone old and new!

    My name is Donna and I too have ME. My ME can fluctuate and at the moment is not very good but I can also go for periods of being quite well. It appears your ME is quite serious. :cry:

    Here is a place to go when you feel no-one really understands or you simply feel in a silly mood :lol:

    Donna x

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  • Posted

    Yes, Donna can be REALLY silly. :magic:

    Sorry to hear you are not so well though Donna - can always tell though - cos you go all quiet :shock: ..... Hope you feel better soon.

    Katie xx smile

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  • Posted

    Sorry you don't feel well Donna but I have little sympathy. What do you expect - I mean ALTON TOWERS of all places to go :shock:

    Hope you get better soon.

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  • Posted


    Well at least you know who definatly wont give you sympathy......erm......yes you Alicia! :shock:

    Only Kidding :P

    For all of you who havent read the previous postings I decided to go for the kill and allow my son to take me to Alton Towers and just when I thought I had survived BANG it hit me like a ten ton lorry :x

    But you know what I am like - stubborn and expect no sympathy but a little wouldnt go a miss Alicia :cry: Please :cry:


    P.S thanks katie for your concerns and you are right I am quite when I am not good. My hubbie thinks its great! :D

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  • Posted

    Donna, I sympathise with anyone who has this condition. I know how it feels and I wouldn't wish it on anyone. but I do think you need to look after yourself a bit better :roll:

    I am doing Wicksteed Park on 11th May with hubby, son and granddaughter, but I [i:e2b8d5633e]won't[/i:e2b8d5633e] be doing the rides and I [i:e2b8d5633e]will[/i:e2b8d5633e] be taking the wheelchair - well my friend's spare one anyway :wink:

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