That early start yesterday just pulled me down and down as the morning went on, I completed my blog and a couple of small bits and pieces, but just before 11 am I went to bed. I felt so bad I was at the point where scrolling on the screen was making me feel sick, like motion sickness but with out the moving. The pain had run away with itself and there was nothing that I could do but lie on my bed as everything I tried upright was making things worse. Sleep was almost instant and I the alarm telling me 3 hours were over appeared all to soon, but once up, I found that the whole day was changed around, I had the biggest thing missing early in the day, I had energy. All I did was to get up and an hour and a half early after 9 hrs sleep and I was totally destroyed. Post nap as long as I stayed still at my PC or later on the settee I felt fine, but movement was the big issue. I have had another 24 hours of pain from the line of my pelvic bone in my back, right down to my toes, they hurt like hell when I put weight on to them and that unmistakable MS shuffling waddle becomes the only possible movement across the room. I guess after so many days of this that that means it is here to stay for a while. I always find myself counting how long something new has been a problem for, as if it gets past the one week mark, there is a real danger of finding it just isn’t going to go anywhere with any speed.
When you feel that bad there really isn’t any way of fighting it, as your control of anything that body does is totally gone. It can be like having a sudden intense bout of flu, OK there are none of the cold like symptoms but everything else is there and just like flu you can do nothing about it but give in. What ever is happening it is the one thing that I just can’t hide at all, Adam says that my body langue screams out that things just aren’t right, but he knows well enough to not try and shove me to bed as I will go when I am good and ready. I have always found it really hard to give into, I can’t accept that I have to stop and I have to sleep and that so suddenly I have lost every little bit of control over my body. Surrender is still a word that hovers around me but one that I really grasp or accept. The longer I am ill the harder it is to give in, I expect that it has a lot to do with the scale of the event, I know that years ago I would come home from work and just head for my bed, still clothed I would lie on top of my bed and shut down, I was shutting down to things that I now would never exit the room for. My ability to cope and to keep going has grown but in an odd way, every time that your body finds a new way of hurting you that is worse than something that you thought couldn’t get worse than, the stack is shuffled downwards. There are symptoms that I am so used to, which 20 odd years ago scared the hell out of me, that I now pay no or little attention to, they used to hold the top spot, now they hold no spot at all.
I used to believe that I now knew every possible symptom to all the conditions I have and inside me I was sure that I know just how bad it could get and what my future would hold. I didn’t and I don’t. Those pains that I thought would kill me alone, are just so slight and so liveable that I have found the ultimate proof that I really was a wimp. Until your body throws things at you that you haven’t known before, you just can’t believe what you really can live with. A few months ago I found it hard to write anything else other than about the pain in my chest and lungs, now known to be my COPD, getting is’t name didn’t end my writing, as the pain was unbelievable. My entire life was taken over by a diaphragm, a pair of lungs and a set of intercostal muscles and what they could do alone or as a set. Now I write little about them, not because they have gone away or have improved in any way, I have just become used to every little bit of it. At this very second my diaphragm is stopping from leaning forward as it is in spasm and like a tight belt, when you lean forward it cuts in, it’s there, it’s always there but it’s now just part of my life. What ever it is, where ever it comes from, it settles into being part of your daily life, I think that what happens, you embrace it and accept it and eventually see it as life.
I think that that is actually one of the really important thing about living happily with any chronic illness, being able to embrace it and to accept it as nothing more than life, the life that is yours and yours alone. I don’t know how or why I have the collection I do, but all of them are now part of me like every other cell in my body. Now I could try to reject them and make my life a totally stupid battle were all I would achieve would be more and more pain and desperation, they will eat away at you and you will soon stop living, just existing. Embrace them and find ways to live with them and around them, then you can live a life maybe not the one you thought you would, but you live, truly live as you have the time and energy to do so. Take it one step further and being ill can actually become a bit of an adventure. Never knowing what will happen next or what trick your body is waiting to play on you, well you are always ready to start that process of acceptance, work around and embracing, if that isn’t your own personal adventure, well I don’t know what is.
A life-affirming post. I love your positivity but also recognise your pain and suffering. Hugs from me too. Thanks for your writing. xxx
acceptance is a huge part of it isnt it I know when I first started having symptoms of MS I used to think it was the worst thing ever but now having had it for over 20 years I realise that what I was suffering was a breeze compared to some of the things I have had to experience and live with now. I guess acceptance is what it is all about but it will never stop us fighting it all the way will it?