Dyspraxia, depression and other ill health

[Foggy]

Isis ... you will probably find that, now you have been diagnosed, your GP will not offer much more help, other than medicating the symptoms. Mine did refer me to a specialist M.E / C.F.S clinic which offered coping strategies and a local support group if I wanted ( I turned the support group down as the group therapy sessions aren't my thing). However, there is a lot of info online and a great forum, "Foggyfriends".

As Kazza mentions, be careful with the co-codomol -- it has "unhelpful" side effects !

Tinnitus is my friend --- like your shakes, it lets me know when things are going pear-shaped ! And, on the sleep front .... very (VERY) hard I know, but try to keep to a normal sleep pattern, or rather bed time routine (as you will be awake at night and want to sleep during the day). But try to keep usual bed and rising times.

[Loads a Debt]

Hi Isis, sorry to hear of your ill health. I too am under the Dr. for a list of symptoms and she as suggested it may be CFS. I had a head scan last week due to having numb hands and feet for the last 4 years and am due the results this weak.

Foggy, interesting you talk about the tinitus. The reason my Dr. sent me for the scan was due to this constant humming headache over the last 8 weeks, which just doesn't go away.

Worrying thing is I've been using my holiday up taking days off due to shear exhaustion and now I have no holiday left until 2013! Also worried that if it gets any worse, my job is very pressurised and an 80 mile round trip every day, I might not be able to continue (which is a shame as I really enjoy my work), and then theres the fact that I'm 3 months into my IVA.

[Foggy]

Hi Loads a debt. If you get a CFS or ME diagnosis you are covered by the DDA (Disability Discrimination Act) and your employer is obliged to make reasonable adjustments to accomodate your condition.

I used to take flex days and holidays when I should have been sick. My employers have now built in extra allowances so that I don't keep triggering review procedures. I am also allowed time off for attending clinics, workshops and the like.

My job has pretty demanding targets, which they can't relax, so the emphasis is on finding ways to work that help. Are you able to work from home at all ( even some of the time)?

One of the big tricks you will learn is not to rush headlong into projects -- even if you feel up to it at the time, you will pay a few days later!! Soemthing I am still particularly bad at, I am afraid, but you need to pace yourself and recharge little and often.

[Loads a Debt]

Many thanks for the info. Foggy, much appreciated.

It's very frustrating. I've always been a proactive and energetic person and now I seem to be spending my weekends resting so I can complete the next weeks work.

I've been open with my boss about the situation and I'm sure we can come to some solution. I've mentioned working 4 days a week in the future but the problem is reducing my income by 20% would be a bit too far regarding my budget. Just need to keep grinning and bearing it for the next 56 months!!!

[Isis Black]

Oh tell me about not going into things full pelt!
My last report I began on such a high!! Was great for 2 days then bang it hit me I couldn't do anything for 2 weeks, I ended up working all hours I coud do, up to last minute really making myself Ill just to hand it in on the final deadline date. I got it in and somehow I passed (only just though lol) but cause of tht I was shattered so exams were a no go

I'm having a family break in a friends caravan so as soon as were back I will get a drs appointment and sort out uni
Hopfully this break will give me time to recharge a bit (I hope)

My problem with the drs is non took my worry of CFS seriously!! I'm on my 3rd dr who hasn't called me stupid for suggesting it or accused me of faking it cause I'm a psychology student! , now that would pass if I'd gone in saying in depressed or suffer anxiety or schizophrenic! But I didn't hell the drs told me I was depressed er I'm only depressed from drs treating me like crap and not listening to my problems!
Luckily this current dr was open to the idea but we had to test for other things first which we have don and all was clear
So CFS is it. I just now need a referral to a specialist in Leicester
Will say we didn't just go into the drs one day and say I've got CFS!
I've questioned it since 2008, after having so many problems, but fobbed off every time. Hubby did his own investigations and asked said could it be ME he didn't know at the time ME and CFS and neigh on the same thing so IRS not like we've cooked up these problems, he's seen me exhausted, in pain, trouble walking.
It's gonna be a hard long slog trying to organise myself in dealing with it.

[Broke of London]

It sounds like you have great support from your husband Isis! Perhaps he could help you find the strategies you need to manage the CFS.

I know what you mean about doctors! I saw the nurse the other day who told me I have worryingly low blood pressure. For years I have been prescribed blood pressure medication for migraines which lowers my blood pressure further until it usually hovers around 80/50...this is the first time anyone has mentioned to me that it might be a problem!! Anyway, to cut a long story short I googled low blood pressure symptoms on the NHS site and they sound exactly like my migraines so I could be creating 'migraines' by taking the medication. Which may explain why I felt better these past three months since I ran out and couldn't get to the surgery to get more! I now only get real migraines and not the mini-migraines induced by low blood pressure. AArggh!!!

[Loads a Debt]

Hi Isis,

I truly understand where you are coming from. I'm also on my 3rd Dr. after nearly 4 years and this only come about because she is my Diabetic Dr.

For at least the last 2 years I've been telling various Drs about the worst of the symtoms. Waking around 4 am every morning and feeling like i've just completed a marathon. The confusion/fogginess and loss of short term memory is frightening some times and now the headaches and joint soreness.

Have you tried changing your diet to help? I've completely given up caffiene and have now started taking a protien shake before bed time. I must admit it helps with the confusion/fogginess in the mornings.

Hope you feel well enough after your break to sort out your current problems.

[Foggy]

I can really identify with the confusion / fogginess and loss of short term memory ( when bad I even forget what I was talking about mid-sentence -- slurring also, which, luckily my work colleagues now accept and know I am not drunk!). Before diagnosis I was panicking because I thought I had early onset alzheimers or some such!

[Loads a Debt]

Ah Foggy, I work in a technical role for a chemical company, so you can imagine what it's like when I'm in a meeting and can't find the right chemical nomenclature or forget results of things i'm currently working on.

[Isis Black]

Oh foggy memry cognitive functions has been such a nightmare at uni, I was sat In lectures just hearing blah blah bah
When reading it just won't go in
I can read something's thrn a few mins later I've forgotten it

My appetite lately has been so up and down some days I feel sick at the thought of eating then other days I find I'm just constantly snaking

I needed to research everything tbh as I'm new to all this but then that's not fun when the mind isn't up for it urgh

Broke of London, you sound a bit like me, I was getting really bad headaches so had een doing as told to take paracetamol. Well I go back and say these headaches are ridiculous!! He asked how many times am I taking paracetamol so tod him about half of headaches I take thm , so he tells me the headaches are caused by too many paracetamols being taken eeeeeeeeeek!!!
So I now try o keep taking them to a minimum and for migraines nothing works so I spend the day in my sunglasses slobber out lol

[Broke of London]

Nothing really works on migraines except sleep for me; popping the pills is a triumph of hope over logic! Have you ever been so bored with a migraine you put the TV on anyway and the next day you turn the TV on and can't hear anything??? Just shows how senstive the brain is during a migraine...on my tv i usually have it up at about 28...with a migraine it's loud at about 4...which I can't even hear with a normal head on me!!!

It will take time to work out what strategies you need to put in place and even to discover how the CFS affects you. It sounds like one of those things which has so many strands it is different for everybody! You just have to go with what your body tells you it needs...whther that's food, rest or whatever.

I have a very short memory coz of dyslexia and I took remedial classes at university which helped me understand my brain better. Did you know you could retain imformation better by sitting in a certain part of the classroom so you see the lecturer head-on, to the left or you or to the right? The colour pen you write in can also affect how well you remember. Highlighting, underlining or circling important sections of text also influences how well you retain information.

Utterly ridiculous but finding the right side of the room to sit in, the colour pen to write with and whether to highlight or underline will all help with how well you remember information. I'm left/green/circle for info LOL!!! Little strategies like these may help you continue with your studies so worth asking the uni what help they can offer. There is also usually a separate exam room with specialist arrangements for disabled students.

[Isis Black]

ah well the dyspraxia has a spanner in the works too, i have to use purple color paper to write on and use a purple overlay sheet to read with, or on my ipad have books in negative so white print on black

yeah its just going to take me some time to get used to it and to find out my limits!
today i have spent all day when walking with the shakes in my legs, it calms a little when sitting but still feel it is there but gets worse the moment i stand up eeeeek

got my eye on some crutches on the lloyds pharmacy that i am considering ordering just to give me that bit more support when my legs are off on one, which atm is most of the time