Monday, 3 October 2011

Fatigue, Fatigue.......Oh & a bit more Fatigue!

Oh my goodness, I have neglected my blog for ages :-( I have such good intentions but my body has other ideas!

Unfortunately I have been really struggling with fatigue over the past couple of months. It has hit me quite hard & I have had real trouble to keep on top of it.
I have found it very hard to get up in the mornings and then by the mid afternoon I will be finding it difficult to stay awake.
I've had fatigue most of the time I have been diagnosed with MS. Actually I would go as far as to stay that I have probably had fatigue for many years but not realised that it was fatigue.
I never really understood fatigue until I was diagnosed with MS & I had the experiences that I have had. I always just assumed it was being a bit tired and needing to catch up with a bit of sleep, but oh how wrong I was!!
When people spoke to me about fatigue, I knew that I have felt tired and have maybe needed more sleep, but the more it has gone on, the more I have really begun to understand it.
It isn't just a need to have a quick nap. It is a physical inability to be able to keep your eyes open. And over the past couple of months it has been much worse than it has ever been for me.
I have struggled to get up in the mornings and then when I do get up I don't have the energy to do very much. I have great ideas in my head of things that I would like to do in that day but I don't have the energy to achieve any of it. It is SO frustrating.
It's quite interesting how Martin can spot it coming on now! We can be sat down in the afternoon, maybe watching a program on television and he will suddenly say to me that I am falling asleep. I'll say to him that I am fine, because as far as I am aware I am fine......but he is normally always right and within minutes I will be asleep!
It's very weird not being able to keep your eyes open. And yes, I fall asleep, but it's because I just physically can't stay awake and that is something that is very hard to deal with.
It's like I have no control over it.........well actually I don't :(
It is strange, because I know that in the past, before being diagnosed, I have had situations where I have felt like this before, but I just put it down to the fact that I was working too hard or doing too much. I had never associated it with fatigue. I thought that it was how everyone felt when they were tired!!
When I was diagnosed, as far as I was aware, I hadn't had any symptoms apart from the ones that had taken me to the Doctors. The pins and needles and altered sensations in my legs that wouldn't go away. But when I look back now, I do really believe that I have had fatigue for a long time.

I have found a book called "
Fighting Fatigue in Multiple Sclerosis" by Nancy Lowenstein Has anyone read this or can anyone tell me whether it's worth getting?

I don't take any medication for fatigue but I am seeing my consultant on October 17th so I am going to discuss it with him. All I am doing to help is rest as much as I can and I am trying to be sensible........but that very rarely works out!!
I am trying as much as I can to just continue with my life. But that means that there are things I want to do!
Martin & I have started swimming again. And that is something that I really enjoy.
I say I go swimming but really I just splash about! My arms work OK, but my legs aren't very good, I can't really feel them and I have no control over them, but I am working on that.

It does wear me out though. I am always exhausted once I have been and I know that I am unable to do anything for the rest of the day.
I am learning that there is a thing called opportunity cost - my psychologist has taught me that!
Say there is something that I really want to do, swimming, but I know that doing it is going to make me tired and so the cost of going swimming is that I need to rest before and afterwards.

It's really frustrating that everything has to be planned, because my body isn't strong enough to just do things on the spur of the moment. Or if I do decide to do something then there is going to be a cost to doing it and I will pay for it afterwards.
Oh the joys of MS!

I am not very good at resting though, I always think that I am just being lazy!
I know that that is ridiculous, but it doesn't stop me feeling guilty and frustrated!

I had a situation recently where Martin & I went away with two other couples for a weekend. We went to Center Parks at Longleat, it was a great weekend.
We went swimming in the pool and the others pulled me around the rapids too...........which was hilarious!
The only problem was that by about 9pm I was exhausted and needed to go to bed. The others generally stayed up and had a drink & played board games, but I just couldn't do it.
It was a nightmare for me. I know I was doing the right thing for me. If I had stayed up I would have spent the next day in bed, so by going to bed early I could enjoy the days with everyone, but why should I have to make a choice........why couldn't I join in with everything?
This is where I drive myself crazy!
I have been diagnosed for 9 years, you would think that I would have my head around all of this by now so why do things like this still get to me and frustrate me? Will I ever be able to deal with this?

On that note, here are some pictures of us at Center Parcs, it was a great weekend and we would definitely return.
They have great facilities for the disabled and everything is so subtle. It's not thrust in your face that you are disabled and maybe need something a little bit different.
Well Done Center Parcs!

Our Lodge

The Blackboard!

A Picture in the lodge!

Claire & Matt!

Joe & Rob!

The hiding telephone box!

Martin & me!

Best wishes everyone!