M.E. CHRONIC FATIGUE SYNDROME PARENTS

[lonewolf]

ARE THER IN ANY PARENTS OUT THERE WITH M.E. OR FIBROMYALGIA.

I'm still not great. I've been overdoing it, which depressingly doesnt take much.

2 of my friends have been looking after me on a timeshare basis which has meant I havent been online very much. I hate being so dependant on others!

I'm usually cold rather than warm.

I'm struggling to make any sense of what I'm trying to say in my head. I'll come back in a bit when I make more sense!

Solo, have you decided what to wear?

Hi ladies, how are you today? I have a lovely form to fill in so I can get some money to pay for all of these taxi's I've been using because I'm too knackered to walk . A cleaner would be nice aswell. The form's a bit of a bugger though. I've got serious panda eyes and half brain dead today, I look like I've been boxing. We won tickets for eurostar so need to save. It's not a word we have in our house though.

Hope you are all OK.

Hi again. Hope you are all doing better.

I got back from Devon - it was a long drive there and a long drive back but we shared the driving which was good - such a relief!
I wore an amethyst coloured, beaded Morgan ball gown as it was the only one I could get on really. My feet and ankles have been swollen up for around 5 weeks and I've still got the strap marks from the Grecian style strappy sandals I was wearing! I didn't dance at alland I always dance.
Dd stayed with my parents - it was her first night away from me and she wouldn't settle. Mum said she finally brought her into her bed at midnight and the little bugger woke her up again at 6.30...she was prodding mums boobs asking for milk! That made me laugh!
Well! I'm off to bed. I'll try to put a picture on my profile of us at the ball. Wont do it now though...too tired!

The dress sounds lovely. Sorry about your feet though . Sometimes it's nice to sit and watch all the drunks fall over people dance. Hope you recover well.

The dress sounds fab Solo, sorry you couldn't do as much as you hoped to. Was it nice to have grown up time though?

I was supposed to be going out tonight. My babysitter let me down though.

My friend is paying for me to go to a spa for the day with her though so I've got things to look forward to.

Thanks ladies! I didn't drink much at all that night, but still felt ropey the following morning(and still do)like a slightly queazy feeling. I have Tinnitus and was struggling to hear conversation! it's sooo frustrating!
I'm sorry your babysitter let you down Coro - nice about the spa though

Can I ask you all what symptoms you get?

I get Tinnitus, numb and tingly limbs, TAtT, sore throats, headaches, extreme pain in arms, hands and legs, sensations on my face. The trouble is that you get these things(and more)so often, that you start to accept them as the norm and forget that you get them
Anyone else?

Dodgy tummy (diarrhoea), really bad back pain that's where my pancreas and gall bladder are (I had to have them checked by having a scan etc. Was not very nice), mood swings, joint pain and tingly hands (I get alot of pins and needles in my feet if I've been leaning on them for a short time), headaches, a little memory loss, blurred vision, tiredness (sometimes gets so bad I hardly have the energy to move). Lovely! I try to ignore them all as possible and just get on with things. I know that the pain isn't anything serious so I ignore it and it eventually goes away. The dodgy tummy is a PITA though .

Yes, I too try to ignore it all, but I often seem to be a misery guts when it's bad...sometimes makes me feel very depressed.
I get mood swings too, but I'm not sure exactly why that is. My memory is crap and sometimes I write like I am a dyslexic 5 year old(no offence intended). I also seem to have suddenly developed alcohol intolerance which I had previously seemed to have gotten away with , I don't drink loads anyway, but quite enjoy(well I did)a couple of glasses of vino.
I get muscles tensing when I'm really tired too(I think I must look odd when that happens).

Did you suffer from depression when you were younger? just looking at a common profile of sufferers. I'm not sure, but I had a set of jabs for Heb B for my job and 2 years after that was when I started getting sick. That was(and is in some areas of research)thought to have been a trigger for ME and MS and has a coommon 2 year after jab link.

I had a bit of depression in my early 20s. I lost focus really and felt a bit lost. Then ds came along.

I had a 2nd hep B jab and the flu jab before I got sick aswell. That's really odd! This could be due to a vaccine then. I have wondered ho I got it. I'd not kissed anyone for a year , all I did was work and look after ds.

I was training as a paediatric nurse. I'm only a misery guts because I'm broke. I've got to fill in the mobility form. I hate doing this. I don't feel too bad sometimes. I don't like the thought of going for a medical. Do you know if everyone has to have one?

I've just applied for a part time job at my local Uni helping students with disabilities so I hope I get an interview with 2 years nursing experience.

Yes, I had depression at 15 and then was hospitalised with severe depression when I was 24. I've had depression on and off for years...They say that people who've had depression are more susceptible to ME. As far as the vaccinations are concerned, there've been many denials about a connection, but I've read up on so much that I'm convinced that there is a connection. My cousin had the vaccine for HepB for her job and was diagnosed with MS two years later. Tell me that's a coincidence too
Hope you got the job.
I imagine that everyone has to have the medical for the mobility. My dad applied for a blue badge(and he really does need one)and was turned down flat. I tried to get DLA, but was turned down for that too. I find it quite hard to ask for any kind of help tbh.

I've been reading some of the vaccine info. I should have been told of the risks before having the Hep injections. I may have to go and find a solicitor. Oh dear!

I get extra tax credits as a disabled parent. I Try to work from home. It's not alot though, about £40 something extra a week but it helps.

I thought about going down the solicitor route too, but tbh, I doubt we'd win. They don't seem to be able to agree(publicly anyway) and it would cost the NHS millions if everyone successfully sued. I don't think anyone is warned of possible problems due to the vaccines and even if some health officials did, you'd then most likely have a similar thing to the MMR/autism link happening...yes it is, no it isn't .
The only place I'm registered as disabled is with work...I'm dreading going back

I've just phoned my union and they are refering me to my local branch so they can investigate. It's worth a try. The Uni were suposto contact me about returning to my course months ago. My tutor was going to contact the course leader and let me know. I have to have a hepatitis B booster as the three jabs I had didn't give me enough immunity though. It might make things orse. I'm not convinced I had Glandular fever, I didn't have a sore throat, just exhaustion, stomach pain and fever. The test they did was a slight positive. I need to go back to the GP as my hands keep becoming stiff when I'm writing and I'm getting pins and needles in my feet.

The tax credit office are easy to deal with. It's a condition which means you are unable to work a full working week 9-5. Workwise, they have to take your condition into account as you are covered by the disability discrimination act.

I had GF as a child.
Sorry, have I missed something? what have you phoned the union about?

I have taken the decision not to have any more HebB boosters. It is a big chance to take in my job, but then I'm exposed to HIV, TB, HepC...the list is endless really, so what do I do for the best? I've never had the flu jab. I asked about it a few years ago and was told that I'm young and healthy enough to fight it off myself. I did inform the nurse at that point that I have ME, she spluttered a bit!

I get free legal advice and stuff with Unison. They are fab. They will even give you money for a holiday if you have not been on one for 4 years and you need a break. I get discounts and all sorts. They will sort out a solicitor if they think it's worthwhile so I won't have to pay.

Where do you work?

I work for the prison service.

Would they move you into the office so it's less demanding? They have to do all they can you know.

No, because I'm employed as an officer. If I changed to admin, I'd have to change my salary too...would not be happy to do either to be truthful. I'm not really an office type. I'm really hands on and a people person. I just hope that I can extend my career break until 2013. Only thing with that is that my salary remains as it was in 2007 and my pension is not added to.
On the plus side. Ds will be 14.5 and Dd will be 6.1 so at school by then.

I'm still hoping to train as a doctor. I don't have the money to sit the test this year so I'll have to wait until next year.

What about being a probation officer? It sounds like you'll be very good at this.

The thing is, my sick record with the prison service is shite - because of the ME, so I don't think anybody else would take me on...sad eh?
Good for you about your training. Sounds as though you have youth on your side? I don't sadly.

They have to take this into account as it is a disablity and not an illness. You can but try. You have nothing to loose.

Perhaps. I think I'll see if I can get the extension first though. I do admit to liking bringing up my Dd myself. My parents had my Ds more than I did whilst he was growing up. I missed so much

You are there for them now and they will always appreciate that. It can be a put off going back, their childhood lasts for such a short time. I've just about managed to be there for ds. His behaviour improved when I was off sick. I think he likes me collecting him and taking him to school. I'm reluctant to go back to the course because the childcare was a nightmare as I had to work shifts. I'll see how this job works out. It's working with disabled students and making sure they get all the help they need whilst they are studying so I know I'll be able to do it. It's part time for 10K which isn't bad once the tax credits etc are added on.