New Page for us all and for our new friends!

good to see u back lindy

I went to advice centre today and its to soon for someone to represent me they wanted me to cancel my appeal next monday the 26th but i cant stand the stress any longer as its really knocking me ill.. so... they gave me some advice so hope it works.. she told me not to move around to much in the chair at the appeal as they will be watchin my every move.. :shock: wish she never said that cause i would have just been me and moved as i needed to as i am not lying i am in constant pain so now i will worry if there watching my every move :o anyway i feel today has been a long day, i didnt sleep well again last night but could now but trying to stay up..

ses, i remember leaving my eldest son (now 21) when he was ethans age to cry it was really horrible but i didnt give in and it worked after about 4 nights not say he was great after that as he has always been a nightmare with sleep..

has anyone at all heard from helen... its so not like her to come on..hope she is ok and hope its just her comp or summit thats broken..

glad u enjoyed ur brothers birthday, and hope u dont experience any backlash from it though.... speak to u all soon luv di xx

Hi Ses, Lindy and Everyone!

Thankyou Ses and Lindy it was a relief that everything was ok. Can try and relax bit more now. :lol:

Good to see you back on site Lindy and hope you are not in too much pain. :lol:

Must be really hard for you Ses with Ethan being so young. :cry: He is at that age where they test your patience. Even more for you when you are already feeling so tired out. :cry: It is hard having to let them cry themselves to sleep. Worse for us I think than for them lol.

You sound like my husband Ses with losing a key. You have a good excuse with this fibro fog. I suppose my husband had been on nights. He lost our only front door key, as children had got the other ones. He went out to the garage to get some soft drinks for work. Came in and put them in his work bag and the key as well but couldn't remember. Had to get a spare of one of the children. Two weeks later looking through his bag and was in his work bag but couldn't remember putting it there.

Bless him he had done 4 12 hour night shifts. :cry: I hope you find your key.

Hope everyone else is coping ok today.

Love Tess x x

Hi Ses, Tess, Di and everyone,

Thanks Ses, will get myself organised and put in another claim. Will also talk to my GP when I see him next. I also had a son who didn`t sleep, still doesn`t but it doesn`t affect me now thank goodness :!: I lost my glasses last Tuesday, still haven`t found them :!: Know I had them at 9pm Mon and am sure I put them on the PC table, searched high and low, even emptied the bins :!: Damn Fibromyalgia

Have only just started to feel anything like normal today, so..... exhausted this morning when I got up, was awake at 4.40am but couldn`t sleep. Had to take Ray to chest Clinic, all I could think about was getting home and resting, don`t know how I walked from car to clinic, he even walked quicker than me and that`s saying something :!:

Well Di, hope everything goes well for you next Mon, like you I would have moved about as normal, surely they don`t expect us to sit rigid, when you`re in pain all the time you tend to keep moving to try and get comfortable. Ray get`s both mobility and care and while he can only walk a few yards without being breathless and in pain he keeps gettng up and stretching his legs as they are more painful if he doesn`t :!:

Well just resting this evening hoping for a better day tomorrow.

Take care all, Love Linda

HI there Tess, Di, Linda, Lindy xxxxx and everyone else xx

Nice to hear you are ok Lindy xx I hope Helen is ok too I am quite worried now, she went to hospital before Christmas didn't she with her foot??? I am right aren't I ???

Yeah Di, it is horrible having to leave them to cry as I feel so awful, but it is like I said to mike he is trying to rule us now and we are the boss not him....... I can't remember the two girls like this??? :roll: anyway just got to be cruel to be kind as they say???? My key turned up on the kitchen floor???? Spooks must have had it????? I have my Council tax apeal on Monday too Di so I am getting agitated too :roll: I was not aware I was eligible to apply that is my argument as there is not enough information out there, and as it is if people are on JSA they automatically get the forms to fill in....... tax credits don't so I am fighting my course..... I even have a local advert for the town hall that is not clear and info from various websites that just mention \"low incomes\" not tax credits so that is my argument!!!! I had bailiffs twice and I have paid this bill since 2002 in full so I am getting so stressed too hun so I kind of understand you getting worried....... I do not know when my next DLA appeal is???? My C-TAX appeal is Monday morning before mid-day!!!!!

My key turned up Tess so relieved I hate it when you mind goes so blank and you cannot recall the time things happen........ I felt as though I had a time last night that had passed me by as it went totally blank!!!!! I bet you get totally lonely when your hubby's on nights......my hubby's changed his shifts now 5-10 so it is kinda of better but Ethan is more of a handful lucky one of the girls are here!!!!! he has three days off though so much better than before!!!!!

Bless you Linda...... I know what you mean about feeling so fatigued and then you having to go somewhere like your hubby's appointment, I do hope you have been resting now hun, taking Ethan to the doctors tomorrow so do hope I have the energy????

Ethan has woke so gonna have to go.......

Luv and hugs xxx

hi ses, tess,linda, lindy and everyone

WHAT a night i had!!.. got to sleep at 6am this morning, after a night of burning in my foot and leg on my right side felt as though i was on fire.. anyone else get that?? i am so stressed out about mondays appeal ses and i just cant seem to stop my mind from going there.. oih meant to say had to call doc out yesterday the pain was so so bad... im now trying morphine anyone tried that??i asked about lyrica but she said a specialist has to give me that... but never said how i can see one. im still waiting on the pain management app since sept so guess its a trial of anything at moment..

on helen.. yes she was going to hospital about her toe.. i do hope nothing is wrong and she is still in hospital.. wish she would let us know she is ok..

I am going to try and find out about a support group as i need something to help me along this long road...

hope everyone is ok and speak soon.. di xx

Hi Di & Everyone

How is the leg and foot now Di? Did the pain settle down sounds really painful. Probably be good for you if you can find a support group in your area. :lol:

Went hospital today about my toes. Said he was going to make something to go in my shoes. Wasn't sure if it would work and if it doesn't have to go back to gp to get referred to rheumatology again. :cry: Go back on the 4th Feb to see him again and should have the inserts for my shoes. :lol:

Was really quick appointment only had to wait ten minutes over my appointment time. Just looked at my toes moved them about and looked at rest of foot. Did a diagram for inserts to be made and I was out the door. Only took about forty minutes in all with waiting time.

See if they work lol :lol:

Hope everyone else is ok today! :lol:

Love Tess x x

HI Di, I have that and then I have ice cold and it feels like there is no circulation in my hip, the burning pain is usually in my spine, my knees go hot or ice cold really weird........ I hope you make a point that you had to call the doc out again on your appeal and mention the morphine too, surely they can't refuse you hun having to take that!!!!! I hope you are having a better day today.......

Hi Tess, oh bless you hun, is it to stop your feet from getting deformed somehow, I guess so as arthritis can do this eh? I do hope you are feeling ok too hun xx

Well, I hope Linda, Lindy, Helen, and everyone else if having a better day......... I have been feeling so depressed too, due to the on going pain and fatigue......... Ethan had a chest infection and is on anti-biotics so he is sleeping better now which is a relief when one is feeling like they have been dragged backwards or something!!!!! Anyway folks joys of winter roll on summer 8)

Gentle hugs xxxx

Sorry Di,

I forgot to leave you this link for a support group in your area ........

http://www.fibromyalgia-associationuk.org/content/view/16/47/

I hope this helps you hun xxxx

ses, thank u so much for that support group address i have emailed them to get the nearest one. You are going through a tuff time and i really feel for u. its amazing how fibro can effect our lifes, i have read in some information that some people can have a \"life\" and continue do to normal things..its amazing how i wish for that and i think everyone else would like that to..

hope ur day everyone is a better than a bad day and i would like to send u all hugs xxxx di xx

Hi All,

Hope everyone is managing ok.

Had a really busy week so far, roll on Friday... :lol: Always busy at this time as finishing old students portfolio`s and starting my new ones. Chase your tail time... Think Im organised now though and back on track after festive period. 3 weeks off makes me lazy.... :P

Connor`s been off school this week with a tummy bug and throat infection.....happy days eh! He seems to be picking up now though.

My right arm is still giving me jip! The only way I can describe it is like a constant ache up the front of my arm which shoots into my elbow. Makes it nigh impossible to lift anything. Shoulders have been \"grumpy\" but not as bad as my arm.

Hospital appt soon though (13th Feb), so not long to wait.

Right, Im back to my paperwork. Just wanted to pop in and say hi and hope all is well (or as well as can be).

Take Care Everyone

Lindy...x

Hi Di, Lindy.......

Yeah Di, it is so nice to hear people being able to still work with this........ it would be so nice to have a normal life!!!!! I think the basis of fibro is there is different strains if you will...... eg I have 18/18 tenderpoints so maybe if a person say has only 11/18 they can cope better??? I hope this makes sense as this is my only suggestion of how some have better time than others???? anyway hun, I hope you have a diary set up and points written down for your difficulties for your apeal as that is what I am going to do, as the fibrofog does not help us hey and now I have no adviser I am going to ensure I have all th facts to say back to them if they ask!!!!

It appears there is a lot of appointments in february??? not long now Linda and so you will get your answers which we in a sense make you feel better, My pain has got worse but as I know what it is, it is not as worrying somehow???? I hope the paperwork is not too time consuming !!!! :roll:

I hope Tess, you are having a good day along with everyone else xxxxxx or should I say a better day than yesterday!!!!!

Take care my dear friends, gentle hugs xxxxx

Hi Di, Linda, Ses, Lindy and Everyone!

I do hope all goes well for you with your appeal Di. You do deserve it! :lol: I get worked up when I have to go to hospital or doctors so don't know how you are feeling. :cry: Good luck for Monday!

Linda I do hope you have found your glasses. :cry: I lost mine one day but only use them for reading then realised I had them on my nose. How silly of me lol. Did Ray get on ok at the Chest Clinic? I do hope you have managed to get some more rest yourself. :lol:

Ses I hope Ethan is feeling a lot better now and his tabs are working. Makes it easier for you when he is on the mend. I do hope you get some relief from your pain. Yes the arthritis can make the toes deformed. Mine don't look deformed although just below my big toe have a lump where bone has broken away and that is painful. Very difficult when trying to buy shoes as well. It is the tendon in my toes that are getting destroyed with the arthritis. He is going to make something to fit in my shoes to help with the pain. Go back to the hosp on 11th Feb for a fitting. I have been feeling really stiff and sore. I am always worse when we have wet weather. :cry:

Lindy I hope your arm is improving. Not long for your appointment now. Is this with the Rheum? 13th Feb is a Friday and I also have appointment on that day with physio. I hope connor is on the mend now and feeling better.

Keep Smiling everyone we will soon have some better weather hopefully :lol:

Love Tessx x

Hi Di, Tess, ses and everyone,

What a week we`ve had :!: I`m exhausted :!: No heating in main living room for three weeks, then when theyfinally put the new radiator in said it was the pump all along and turned everything off inc water :cry: So nothing but a fan heater till yesterday. All sorted at last makes you appreciate central heating

Thanks Tess, chest clinic ok, had 10 blood tests :cry: A CT scan 13th Feb and a lung function test followed by clinic app. 23rd Feb Looking into 3 things, exposure to asbestos, connection with the birds he keeps or side effect of one of his tablets :!: We met the low vision liason nurse on Weds, she was lovely, the only person in years who has cared for us as people not just patients. Getting a sensory impaired assessment done for ray and assessment for me as his carer to help with my needs, fibro connected or otherwise. Already rang and completed a telephone assessment for me :!: She was just so concerned about how we manage with everything.

Had a very interesting conversation with this nurse about DLA :!: She says it is so difficult as people with identical conditions never seem to be assessed the same. Apparently its all about knowing how to fill the form in using the right phrases etc. they go on a 3 day course to learn how to fill in the forms to help their patients get the benefit :!: There`s no wonder we struggle.

Followed that up with GP today about ray`s DLA as I was told that he is supposed to be an assessor for the appeals service :!: Well he was certainly very knowledgeable about it. Said Ray could try to get an increase in his care compenent because of his sight loss, but didn`t think he met the criteria! To get from the middle rate to the higher rate you have to need constant attention all night as well as the help during the day :!: I said well technically he does because our toilet is downstairs and because he wouldn`t be safe moving up and downstairs on his own he sleeps on the sofa bed. GP said that wouldn`t count as they would just say to have a comode upstairs :!:

I was up for trying again after talking to ray`s nurse, but no sure now after talking to GP he didn`t exactly inspire you with confidence :!:

Well Di I wish you all the luck, hope you get what is rightly yours. I have so much on my plate I can`t face the struggle you`re having. Will be thinking of you. It`s not fair though how do these so called disabled people who con the benefits people, manage to convince them. they must know something we don`t :!:

Well ses and tess I hope things are not too bad for you today, take care

Love Linda

Hi All,

Yeah Tess its with the Rheumatologist. So we`ll see what he/she says if anything. Connor`s much better now thanx. Hope all is ok with yourself.

Linda ur rite about this DLA forms. I used to fill them in all the time for patients. Ur rite about Ray needing assistance during the nite....coz its u that gives it. I wouldnt go with what ur GP says. AND even if it was using a commode , u could technically say he still requires assistance due to physical problems and poor sight. Even someone who needs reminding to take medication coz if they didnt take it their physical or mental state would deteriorate. I so wish I was near u...Id help u fill in the form.

SES & DI , hope u and urs is ok.

Take Care Everyone

Catch up soon.

Lindy...x

Hi Linda, Lindy and Everyone

Poor you Linda with your heating. :cry: I bet it has been cold for you. Especially with Ray and yourself not being able to move around to well.

What a lot of bloods for Ray bless him. My neighbour had trouble with breathing and found out she had fibrosis that is in the lungs. Didn't smoke but told her it could be to do when she was breeding buggies. I hope they find out what it is soon for Ray.

I don't relish the thought of filing those forms out for DLA. Don't feel I need to do that just yet. Depends how my walking goes with my arthritis.

I am not too bad Lindy aches and pains in knees today and had a painful right wrist. :cry:

I hope everyone else is keeping ok. :lol:

Love Tess x x