Today I have woken up feeling utterly miserable. I didn't manage to wake up until 2pm either as I couldn't keep my eyes open and I only really woke up then before I wet the bed. As I have said before I do think that the psychological affects of this condition can be much worse than the physical, although that is why I'm feeling low in the first place. I just don't cope well with being cooped up for too long. It's not even that sunny a day today to try and sit out in the garden and my brain is a bit too foggy to be able to concentrate on a film or something. So I thought I'd blog instead and try and get some of my feelings out.
I have taken to my bed because I feel so rubbish but at the same time I feel a bit guilty because like I said I didn't wake up till 2pm and because being in bed doesn't exactly do your mood any favours. It's difficult to know what to do at times. Especially when physically you can't move about as much either. Going downstairs does mean having some company but at the moment myself and stairs are not the best of friends. I have even tried going back to sleep but even that is eluding me at the moment and it kicks off that viscious cycle again of I have already slept long enough and it is not going to improve my mood. Somedays when I need it I can happily let myself sleep 18 hours but today because I feel so bored and miserable I feel as though I should be trying to help myself feel better not going back to sleep.
It's a difficult one but understandable. Especially after being on holiday where although I never ventured further than the restaurant next door and that one miraculous day that I went to the supermarket I was at least out by the pool and gabbing to anyone that would listen. Not strictly true because I do have some good friends there and the restaurant just so happens to be my favourite restaurant ever.
To make things just that little bit harder my wheelchair isn't being delivered until Friday so I feel all the more trapped. I thought that I would be feeling completely depressed about needing a wheelchair because it would be a constant reminder of just how much my body has changed but after the airport incident I am trying to see it as a positive thing. At least I will be able to get out and live somewhat normally without creating even more fatigue and pain. Who knows how I will feel once it arrives and I am fed up of being bashed on the head or have broken toes? But with every painful step around the house and days like today when I don't know what to do with myself the more I'm seeing it as a sign of freedom. Of course I'll still need help to get out in the first place and unfortunately we live in a hilly area so I best not attempt to go out on my own or I may be in plaster and have no teeth aswell and then I probably will feel sorry for myself.
I put off getting a wheelchair for the longest time, mainly because the ME specialist said to try and walk and that if I started using a chair I would come to rely on it. But isn't that the point? If you have trouble walking any reasonable distance, not to use a wheelchair is going to seriously limit what you can do. You become housebound and isolated, and how is that good for your mental health. I have been able to get out so much more with the wheelchair and last much longer energy-wise. it's definately a positive thing. I also got a disability scooter so I don't have to rely on my partner all the time. In a hill area like yours it would mean you could get out and not worry about getting back. Hope this helps. x
ReplyDeleteI can kind of see their point we in no way want to weaken our muscles anymore but surely every time you walk any more than a few steps and are crying with pain that's just as bad. If having a wheelchair means that we can get out and somehow lead a fuller life then they should be happy with that. It's a small way of us taking back some control. Then it's up to the doctors to help me build up my legs so that I can use them more. I have the chair on hire for 2 months and then will review it again then if I need to have anything more long term. It's probably still not the best idea for me to go out on my own yet as I will probably fall asleep.
ReplyDeleteThank you for all your advice Tora. I'm slowly getting to grips with this google + business too. It's all a bit confusing.
Xx