Coping with ME

It's been a while...

2007-03-06T09:32:00.000Z

Well, things this end just seem to have been so hectic! I was so extremely tired at the end of last week after having to get up early every day. I tried to go to bed early but I just couldn’t get to sleep then because it was not my normal routine. This week is not much better. I seem to be sleeping at night a lot better than I was, which helps a little, but I am still having to get up at 8am and I do not like it.

On the bright side, I am going into town today and having my hair cut. Am thinking something fairly short and sassy for the summer! It will take my mind away from having to have that blood test which I have been putting off for about a month now. It is to test my TSH and T4 levels. My levels according to ‘standards’ are in the normal range but towards the bottom end of normal so according to my specialist they need a boost with thyroxine.

I am just feeling so frustrated at the moment. I am feeling fairly normal again, apart from getting tired easily, and I really want to get a part time job just to get out the house and feel like I am contributing towards something beneficial and useful. However, I have to be so careful that I don’t overdo it and end up back where I started. I will keep you posted on things as they occur.

Tired and sleepy

2007-02-28T17:26:00.000Z

I am really suffering at the moment. I would normally stay in bed until about 10am ish, and sleep, but I am having to get up at 8am, which means I essentially am woken at 7.30pm with the alarm when my partner gets up.

I am having to get up early to let the workmen in who are re-doing our kitchen and they arrive so early. I have only got up early for two days and I am really suffering already and have to do it for another week :(

The only way around this I can see is to ge to bed three hours earlier to make up for it - so tonight I will be in bed by 8pm (7pm just seems a little too early!).

What shall I do?

2007-02-26T14:37:00.000Z

Well because lately I have been feeling a little better (on the whole) compared to say this time last year I have been thinking about the possibility of doing a little part time work. It’s a difficult one though because I would like a little mental stimulation and something to get “stuck into to” but without too much responsibility on me in case I have a bad day. Have any other ME sufferers out there found a happy balance between work and rest?

CFS – My experience

2007-02-23T13:31:00.000Z

This is just a little insight into my personal thoughts and views on CFS – I am not a doctor, this is just my opinion.

When I first got ill I knew myself that this disease was a physical thing and that it was not ‘all in my head’ as many others believe. I went to my GP’s numerous times and was told that many people have these symptoms and not to assume it was ME, it could be any number of things. When all the blood tests came back good the GP essentially said there was nothing more they could do for me except prescribe anti-depressants and a cognitive therapy group. This response just made me so angry – I said “but I am not depressed, I am severely fatigued”, the reply came back “but the treatment of this condition is surgery policy, it’s all we can offer”. Can you believe it???

So, after refusing the NHS treatment I searched for a private specialist and finally found one. Her website is www.drmyhill.co.uk and then I waited months to be seen. I had blood tests that were sent to a biochemist who really examined all the cells and their contents. The results came back a few weeks later and I had mitochondrial failure – a common problem with heart patients. The biochemist also found my nickel level to be three times the safe upper limit and hence the cause of the mitochondrial failure. Apparently elevated nickel levels are very common but no-one ever knows because they don’t have their levels tested.

So, at least now I knew why I was ill and I had to go about getting better. I started out by leaving work – although I had been off sick for a while anyway (I am a hydrogeologist if you’re interested!). Then I started taking the mountain of vitamin supplements that were suggested to me:

Daily I take
Fish oil
Multi-vitamin
Vitamin D
Vitamin C
Niacinamide
Co-Q10
Thyroxine
D-ribose powder
Zinc drops
Multi mineral powder in a drink

I think that’s it! It sounds a lot but it was all things I was missing or low in. The zinc is to displace the nickel and once the Ni is free in my body it can be sweated out via my detox regime.

That’s about where I am at presently and I have to reiterate it really DOES WORK.

In my opinion though the symptoms of CFS – of which there are many – are caused by a physical problem in your body that needs to be found. Once you have established the cause you can begin to treat it.

Friday blues

2007-02-23T13:23:00.000Z

It’s Friday and the weekend is nearly here. I have a free day today – no commitments so I am taking it easy after a fairly busy week.

I should really have another sauna but I don’t really have the energy. The whole process takes near enough 2 hours and who enjoys sitting in a plastic cube sweating?

I am feeling quite tired at the moment, mainly I think because I haven’t slept well this week. It’s lunchtime and I am still sat here in my dressing gown – I feel a bit naughty but no-one will ever know!

Saunas

2007-02-22T15:31:00.000Z

After extensive testing I have been diagnosed with mitochondrial failure as a result of nickel poisoning. This did come as a bit of a shock to me a first! The nickel I think must have come from braces that I wore when I was younger for several years – although I will never know for sure.

Nickel is a carcinogen so it is vital that I try and remove it from my body ASAP. Therefore I have bought this portable sauna thing that is in the spare room. I must look hilarious when I am in it as just my head sticks out the top! It heats up using infra red rays and then when you have sweated for a bit you have to dash to the shower and wash it all off. Progress is slow but I think I am getting there.

The saunaing is really just a small part of what I am doing to get better. I am on a cocktail of vitamins, B12 injections, thyroxine and zinc drops. As I said though, I am a lot better than I was a year ago so it is all working. I will probably have to keep it all up for another year though.

It seems that chronic fatigue is just a symptom that can be caused by many different things. I think it is very important to establish what the cause of your symptoms are before really knowing what will work best for you.

Wedding dresses

2007-02-22T15:26:00.000Z

Wow, what I day I had yesterday. I am getting married next year so I went with a friend looking at dresses and trying some on! It was very exciting and great fun but when I got home last night I was completely bushed. I went to bed early but I still could not sleep!

Today I have been for my Bowen Therapy session in a last ditch attempt to try and cure my whiplash pain. It is only my second session but it does seem to be working, so I am keeping my fingers crossed.

Feeling quite tired now though so I think I will just curl up and watch a film or something.

Eyeball images

2007-02-20T21:05:00.000Z

Wow, I never knew that a photo could be taken of the interior of my eye. I have just got back form the opticians and that's exactly what they did - amazing! The good news is they said that my optic nerve and other things in there were looking very young - like a ten year olds. So, at least part of my body is in good shape!

Welcome - a bit of background...

2007-02-19T15:22:00.000Z

Welcome to my new blog. It’s always the same isn’t it – I have been meaning to do this for ages now and have only just got around to it.

Well, a little bit of background about my condition…

I was taken ill in October 2004 with a virus that I never really recovered from. I thought I was getting better, as you do, I mean people usually recover from being ill don’t they? After a couple of weeks I was back into my normal daily routine, but I never really felt great. I was always tired and kept getting dizzy spells, both of which were never previously a problem. So, I did what anyone would do, I went to see the doctor, after which a long struggle ensued. I was backwards and forwards so many times that the surgery started to feel like my second home.

Well, to cut a long storey short, I had so much blood taken that I was surprised I had any left and still nothing came up on the results. I kept battling on…

Then, to make matters even worse, a lorry hit me on the motorway. I had never been in a car accident before and it couldn’t really have happened at a worse time. My condition spiralled downhill even more. AND I now had whiplash as well.

I was then housebound for several weeks and missed loads of Uni (I was doing an MSc at the time). After several long months I eventually found myself a private specialist who began treating me at the start of 2006. I had to find this specialist myself with no help from my GP!

Now, having been on their treatment I am feeling an awful lot better than I was but will probably take another year or so to get back to a near normal energy level.

Weary old eyes

2007-02-20T12:11:00.005Z

Well, I did not sleep at all well last night. In fact I haven’t slept very well for quite a few nights now – for no particular reason. Very annoying.

So feeling rather tired, well I suppose that’s pretty normal really, I am off to the opticians later today. I haven’t been for quite a while now and the practice has changed hands in the mean time to a friendly young couple that I somehow ended up going Go-Karting with a few months ago. That I did not enjoy at all, it just made me feel dizzy rumbling around a damp and therefore skiddy track. I gave up in the end, especially since I had been lapped about 4 times by the boys – who all seemed to get into their ultra competitive mode!

Since I have to go to town perhaps I could go shopping – see if any of the sales are still on. Ah well, I’ll see how I feel alter on.

Anyway, I had better get off and dress. I don’t feel as though I can sit around in my dressing gown all day – is a bit naughty!