Fibromyalgia (part 2)

purplecatlover

did the clocks go [STRIKE]back[/STRIKE]forward last night or is it tonight? i always get majorily confused when they change, if they went forward does that mean it was 7 am when i got up not 8?

raeh it is quite possible that i moved photos around in my photobucket thus breaking the links. but if your ever really bored the kenya album in there has most of the pictures, only a few hundred. it was an amazing trip and is such a beautiful country.

jo it may be too late to organise before your medical but if at all possible i would suggest talking to dial or cab for advice, or a welfare worker. i think you have to tell them you work (given it counts as a change in circs of which they must be notified), but point out that it is only part time (if it is), is at home so there is no travel etc involved and that you have to soend the hours not at work resting and recuperating. explain that afternoon is your best time of day. i would also reccommend joinging benefitsandwork and asking on their forum maybe as well as reading their guides for every part of the process and detail what to expect iirc. good luck with it.

Careful_with_that_Axe

It seems so unfair that when I'm at my most tired that I have trouble sleeping! In some way, it's probably a good thing that I'm up - what with the clock change and it's not like I don't have any housework to do!

raeh, you poor lovey. I'm glad we can make you giggle though. Can you give yourself a little treat to clear your mind? A nice walk in the Spring air or sommat?

jo - welcome. I think you've had excellent advice from pcl, and I can't think of anything to add except to tell them the situation with living where you work and so feeling that you have to appear to be capable but the toll it takes on you physically? Good luck.
Oh, and tell them about the intermittent symptoms such as the tremor.

unity, I think it was you that mentioned the twitches when you're sleeping - another one of those symptoms that I thought was just a "me" thing!
I tend to have a full body twitch just as I'm dropping off to sleep which often wakes me and frequently launch the cat off the bed with an involuntary kick.
Last time I shared a room (not a bed - it was my ex-SIL - get yer mind out of the gutter!) with someone, she mentioned that I twitched during the night.

p.s. When I met with s/e, I managed to send her off with about 15 books to try out, so my shelves are getting a lot clearer and the flat doesn't resemble a library so much - result!!

suep

Ok they've all gone and Im still in one piece, Ive even potted up some violas this afternoon, but Im not moving again accept to go to the loo and bed.

Hi Jo welcome to the group, it's so many years since I had my medical that I cant really remember much about it and even if I could I dont think I could add anything to what the others have said, except if you do get turned down again this time, dont leave it so long to re-apply or even appeal against the decision. Good luck.

cwta I think it might have been me that mentioned the twitching, Ive always had the whole body one before I fall to sleep, but now Im getting them in all my muscles whenever I sit or lay anywhere, it's keeping dh awake and my laptop keeps jumping off my lap from the twitches in my legs, its getting to be a real nuisance lately. I wasnt sure if it was a Fibro thing or not but it seems to be.

sharon59

You all seem to have been very busy over the weekend.
welcome Jo -just be honest at your meeting.Write a list in advance logging your problems if you are like me with an awful memory!!!
Big hugs to everyone.
I have been really lucky and had my DS,DIL and darling Olly here.He is 9 months now and a little darling and brings a special emotion in my heart when l cuddle him.We also had my cousin plus his wife and 2 little ones so its been manic!!!!
At times the buzz was great to help me forget but at others it was hard as it reminded me of what l have to leave behind.Starting to get angry with the cancer and suppose this is part of the process as a psychologist would say.
Saw a programme last week about a family who were smoking drinking too much and eating rubbish-they were given health checks got told they will die early etc but no way did they care-l was yelling very rude words at tv -ending with a big "its not fair" moment and 10 min sobbing.
calmer today so dont worry!
Lovely sunny but nippy day here-love days like this.
love to all
sharon xxx

Jo_King

Hi folks. Thanks for the advice. To be honest, one of the reasons I've applied is because I'm just not managing working full-time and want to cut my hours - but can't afford it (not with gym membership for swimming, prescription charges and fortnightly shiatsu treatments!). I guess I've heard so many nightmare stories about appeals that I'm already steeling myself for appeal before the medical. The CAB helped me fill in the form and said it's fine to mention working - especially since it's essentially sitting listening and I live onsite. The list's a good idea - I'll get going on that tonight. Thanks. All this focusing on what I can't do leaves me feeling pretty down at heart.

Re the twitches - one of the earliest symptoms of my FMS was twitching, especially at night, but all the time during flares. It got to the point where, if we were travelling, my sister's first question was 'is it a twin room?' I kicked her black and blue any time we had to share a double bed. Maybe it was just my deep rooted anger issues...

The breathing exercises help when it's keeping me awake - closing my eyes and breathing into each part of the body in sequence (left foot, left calf and so on). It takes a bit of practice, but it does help. As has knackering myself swimming late evening. I may be knackered, but at least I don't notice the twitches!

suep

Hi Sharon it's lovely to see you again, Im glad you have had a lovely time with your family today, grandchildren are very special aren't they, I know what you mean about the feeling you get when you hold your little one, Im the same with my 2, they are such a gift, even if I dont get much time to cuddle them now that they are running around.

I can understand how angry you must have felt seeing that family on the tv, but they dont know what's round the corner and anything could happen to them in the future. I have felt like that a few times about my dad, I know its a horrible thing to say but oh's dad, who we have nothing to do with is a really bad man who beat his wife and kids and Ive wondered why my dad and not his ?

Unity

sharon59 wrote: »

You all seem to have been very busy over the weekend.
welcome Jo -just be honest at your meeting.Write a list in advance logging your problems if you are like me with an awful memory!!!
Big hugs to everyone.
I have been really lucky and had my DS,DIL and darling Olly here.He is 9 months now and a little darling and brings a special emotion in my heart when l cuddle him.We also had my cousin plus his wife and 2 little ones so its been manic!!!!
At times the buzz was great to help me forget but at others it was hard as it reminded me of what l have to leave behind.Starting to get angry with the cancer and suppose this is part of the process as a psychologist would say.
Saw a programme last week about a family who were smoking drinking too much and eating rubbish-they were given health checks got told they will die early etc but no way did they care-l was yelling very rude words at tv -ending with a big "its not fair" moment and 10 min sobbing.
calmer today so dont worry!
Lovely sunny but nippy day here-love days like this.
love to all
sharon xxx

Hi Sharon,

I know there's nothing anyone can do or say that will help in any way - the best thing I can do is offer a very gentle hug missus. I hope you also know that if wishes come true, then you will come through this - as everyone on here is rooting for you. You are such a genuine helpful and supportive person that you deserve the very best. :T

I pm'd you, don't know if you got it - but I meant what I said .

Chin up, when you can manage it and when you can't lean on those here.

Love,
Unity

Careful_with_that_Axe

^ wot she said

sharon, I'm not surprised you got angry at the programe - coz it isn't fair is it. It is not in any way bleedin fair or right.
Cuddles from little ones is special. Just about make your heart melt, eh.

Unity

Ah CWTA I wish I could have come with you to see the Aurora :rolleyes: - I'll do it one day. Fancy them saying you couldn't take your crutches! I always take mine and although they x-ray them and take them apart just to make sure I'm not Edward Fox in 'The Day of the Jackal, I've not had that many problems.

Suep I'm glad you got the E-card, that site is good and you can send all the cards you want for £5 a year, I haven't seen better animation - although I have tried elsewhere.

Apologies to everyone for not being around, the neurological things have been a tad trying since the last time I was here. Early last night I started with terrible vertigo and when I went to bed it got worse and reminded me of the odd (very odd;)) time I've been squiffy and ended up with that 'whirling pit' sensation. I feel like everything is constantly moving to the right and have even had to use my crutches indoors just to keep my balance. I've got a constant headache, pain from the nerves in my wrists and the cranial shingles sensation which feels like having a pot of boiling water thrown in yer face :eek: (I reckon Suep's tea travelled a long way:D) and sure enough the facial blisters arrived again today then the tinnitus is driving me daft so the MP3 player is a constant companion. Apart from that I'm great . Trouble is I hate to be idle so I'm always either reading or knitting and just at present I can't do either.

Trouble is, even on the days when you can't spend all your spoons allowance, you never get to carry them forward do you?:rolleyes: So my allocation for today is up for grabs if anyone else can use them:D.

Careful_with_that_Axe

Unity, you don't have to apologise for not being around. Like someone said earlier on, just stick your head round the door every so often so we know you're still OKish. If you can.

The cranial shingles sounds an absolute nightmare you poor soul! What, if anything, can you take for that?

The vertigo thing is something I get as a withdrawal symptom from one of my meds when the does is wearing off. It's almost like you turn your head and your bran turns a couple of seconds later and is really disorienting. Hope you recover soon from this bout.
I keep audio books on my MP3 as well as music to help while away the hours.
I would love your spoons, but I suspect they would get lost in transit. Thanks for the offer!