SSSSOOOO Tired this week . Had brill birthday , but paying for it so much .

[pottypam]

I had a brill birthday , went out with freind for lunch and then in evening went out with my younger two kids for a loverly meal. out the next day for an hour as tiredness kicking in and felt walking with lead legs and aching back and hands that did not want to work dropping thing could not pick upso though ok get the hint ,Go home.

that eve could not move stayed on the sofa , could not get off it so stayed there all night till had to go to bathroom then bed no sleep just aching , burning and face neck and head throbing.finger and toes on fire .

next day sofa just so could watch tv but fingers even hurt using the remote lol. No inclination to get online , just wanted to vanish into a god sleep and hope would wake feeling bright and breezy. but no feel as bad today .

I have taken so many differant drugs over the years ,but they been messed with in last few months and it making me i think the worse have been for years . Taking me longer to get to some form of life but taking less to put me back in state of feeling rubbish .

I am hoping more and more that the new infusion even just get back to how i was 6 months ago but to honest i am not holding my breath .

Was making plans with afreind to enjoy this xmas as not previous but am wondering if will be able to and that makes me sad , as i know that with no op on my back when the stenosis gets worse i will not be able to walk at all I want to fit as much in this year as i can .

mmmmm I am hoping i can .. and if not will not be because not tried .

Bring on Halloween :)))

[sylvi]

Don't you dare be despondent, see how you feel nearer xmas. Take one day at a time. I'm glad you had a lovely birthday and meal, what were you 21!!!! You must just rest now my friend,yes i'm the worst one to talk,but your body is telling what to do.

I had a really good nights sleep and this morning felt full of the joys of spring in my head. So i went over to bedworth in little old scooter and got the prescriptions and had a good nosy round. Came back and started in the garden, getting plants indoors and tidying up. Stopped for a bit of lunch and went back out again. Had enough now so i am sitting here resting and seeing what you all are doing.

Take care.

sylvia. xx

[Hidden]

Pleased you had a nice birthday, but do hope you are feeling better?

It is important to try and pace yourself.. I get nervous about forward planning as we all know our disease can be variable.. how about trying to rest more and rethink christmas nearer to the time? x

[pottypam]

Thank you Summer and Sylvia ,

I think it just feel have gone backwards of late , but i do feel positive most of the time ,probaly as had it for so long , do not know what it like to be without .

Think it also the spinal and cervical things , can cope with anything but my head and neck, but hey ho, will get used to it , and determind to enjoy Halloween and Xmas ... I think want ot be a bit of a rebal so tired , of planning ahead , just sometimes want to be spontanious, but i do pay for it later . but at least it not affect any one else .So can hibernate . Just wish it not painful driving now as it my only way to get out and about . But will smile and get on with it , as I hope all you will try too. and I hope you also feel ok and we must not get down , Now i want to party :)))))

[Hidden]

you poor thing - and i agree how nice it would be to be spontanous - i would love to get the kids up and ready and travel to the protest marches ( well actually i think i want to be 16 again and full of teenage anxt and able to do things where i don't care about the consequences and blame everyone else I want to stay out all night, behave badly and stop preplanning every move - that drives me mad.) So because i am so boring, please go out have a blast at halloween and tell me all about it so i can pretend i was there as well.

[sciqueen]

Hi

In the summer before my diagnosis, we had made plans to go away for the half term. I have deteriated since my diagnosis and the drugs have not started to work as yet. As a consequence we have had to change our plans. I did not even make it to half term before I was sent home from work and am now on steroids to try and help reduce the swelling and the constant pain i have been in.

We are now staying at home and I am making plans to go to the pictures, a shopping trip and doing something as a family (started mtx today, so hoping I will be well enough).

A friend text me and asked if I wanted to g away for a short break on monday gone, I had to say no, "not until my disease is managed". I love travelling, but daren't as every day is different with this disease. I still believe it will be managed some day. Until then I am taking it each day as it comes.

I am also tired too, but I think pain makes you tired, the medication we are on makes you tired also. Some peps on here have managed to travel and have even gone abroad. I think that will be us some time in the future.

So until warmer climate beckons I too am looking forward to chrimbo and am secretley making plans and hopeing that I won't have any med changes so I can at least enjoy that!!

Have a pain free halloween glad you enjoyed your birthday

Sci