Two of my main and most troublesome symptoms are pain and fatigue. The pain that I experience is pretty much all over my body but it's especially bad in my feet, my hands, my legs and my lower back. The bottom of my feet feel like I've been walking on glass and it's caused lots of little cuts all over the bottom of them. It also feels as though somebody has taken the skin off my feet, they've then shrunk it and put it back on my feet but have to really stretch it over the bottom of them because they don't fit. It's that stretching sensation which is horrible.
My toes feel as though I have been outside in the freezing cold but then come inside to a warm room where my toes start burning.....it's that burning sensation I get all over my toes that is so painful.
In my lower back I get a sensation that feels as though someone has got a glove on that has hundreds of pins attached to it. They are then stabbing these into my lower back.......not pleasant :-(
Then we come to my hands. They go bright red and they look quite swollen. It then feels as though someone has taken a razor blade and slashed my hands all over.
Obviously nobody has done any of these things to me, it's just the altered sensations and how they make me feel. Because pain is an invisible symptom, I am always trying to find ways to explain how it feels.
I have just read back what I've written and I know it sounds a little over dramatic but I can assure you that unfortunately they all feel exactly as I've described it :-(
In fact, only the other night I woke up in tears because my feet and hands were so painful. And it is the type of pain that just makes you feel sick because it is so intense. I took some Oramorph and eventually managed to get back to sleep but it's not an easy situation. :-(
The other problem I face, which is so much worse in this heat, is extreme fatigue. Now I never really understood what fatigue was until I started experiencing it myself. Like a lot of people, I thought it just meant being a bit more tired than normal, but it's so much more than that.
I find it physically very difficult to actually keep my eyes open. I feel like I've been hit by a truck and most of the time I don't even realise that I'm falling asleep. Sometimes Martin and I can be watching something on television. I'm fully up for watching whatever programme or film it is and suddenly Martin will pause it and tell me that I'm falling asleep. I normally try and dispute this and tell him to start playing the programme again, but normally within about five or ten minutes my eyes have closed and I am asleep! It is incredibly frustrating!
One problem that does occur which drives me mad is that Martin and I are very keen on going to the cinema, we've got a membership to our local Picturehouse which means that we get to see free members previews. Every now and then, on a Sunday morning, they will show a film that hasn't been released yet but it's only available to people with a membership. My problem though is staying awake......being in a dark, air conditioned cinema is the perfect conditions for me to nod off! The only thing that keeps me awake is if I have some sweets or chocolate to nibble on throughout the film. It is incredibly annoying because I really enjoy watching films, I just wish I could stay awake for them!
Just to go off on a little tangent, I think I may have mentioned it before but I want to bring your attention to something called a CEA card. CEA stands for Cinema Exhibitors Card and if you are disabled you can apply for one of these cards and it allows you to take a Carer with you to the cinema for free. So for Martin and I, I have the membership and then Martin gets in free because he is there as my Carer. It is basically so that you have someone with you who can take care of you in the case of any emergency.
For more information go to their website https://www.ceacard.co.uk/index.aspx
And so.....where was I? Oh yes, fatigue! ;-)
It's a symptom that I really try and fight which is probably one of the worst things I could do. I use up so much energy trying to fight it when really I should save that energy and just plan to have a rest during the day........see I know what I should be doing!! ;-)
We have recently got ourselves into a bit of a routine. We get up as normal and do whatever we need to. Then at some point between around 3pm and 4pm I will go for a sleep for about an hour or so (it's been more than that in this heat though) Martin will wake me up normally around 5pm and then I am able to stay awake for a couple of hours in the evening.
It is a difficult one because I do get the mickey taken out of me and I get told I'm lazy etc. This did affect me to begin with but I don't let it bother me anymore because I know that I am genuine and I have no real control over the fatigue.
I hope everyone is enjoying the sunshine, even if the heat is a little more challenging to deal with! :-)
XxXxX
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