I am struggling again, the past few days have just wiped me out and have supplied again the proof that I just can’t manage outside my routines. It isn’t that major things have landed on me or that I have been trying to push myself, it is just a chain of small things which have happened. with the result of my being totally wiped out and in increased pain. I suppose this is really a good example of how little it takes to push the downward spiral button.
Adam has been on holiday for the last two weeks and it was his mothers birthday on Wednesday, so there have been increased phone calls and disruption to routine. On Tuesday afternoon I headed of to bed as normal, I was already really tired, more than normal so those 2hrs of sleep were set there as a golden point in my day. Before I went Adam told me he might not be there when I got up as he was going out to buy a Birthday present, with that in my head and having set my alarm for 2hrs, I curled up and tried to find the right position for the pain to be low enough so I could sleep. I was woken not by my alarm but by the telephone ringing in the living room, we have the ringer in the bedroom off so that just one or two rings don’t wake me, but it did, I listened to two more rings then answered assuming this meant that Adam had gone. The clock showed I had only been asleep for 25 mins, the call was for Adam but he was in the bathroom not actually out at all. Once woken I can never go to sleep again so I got up and switched the PC on for the rest of the day. Although feeling really tired I stayed up to my normal time as I have learned over they years that sleep routines are important, mess about and I get messed up.
I woke on Wednesday morning at 5:15am, Adam was snoring loudly in my left ear. I tried but that was my night over! At 9am Adam left the house to spend the planned day cycling with his Mum, the weather was wonderful so I knew they would have a good day. My morning was wonderfully peaceful, but I was struggling to get through to 2pm and my daily nap, Adam called me at lunchtime, just as he would on a work day, once I had spoken to him, I was clear to go to bed and get my now much needed 2hrs. No I didn’t, I got just an hour, the postman rang the doorbell as I had to sign for a parcel for Adam. Another nap killed, I now just had to wait for Adam to be home at 8, which of course he didn’t it was actually nearly 10pm and he came home clutching some after-sun, he had really badly burnt himself. By the time he had a shower and we put the first coat of cream on, waited for it to dry in and added the second, it was 1am, all the rubbing actions had destroyed both my arms they felt heavy and moving them was painful. I slept like the dead through to 7am. Yesterday included more applications of cream and a proper 2 hour nap, but the damage had been done and I spent all day heading down and down.
By last night I was sitting on the settee, I didn’t know what to do with any of my limbs, both my ankles were triple their normal size and the skin was tight and painful, every muscle in my legs were screaming at me, some with a heavy over used feel, others with sharp screaming spasms. Sitting was also making the pain in my buttocks and upper thigh almost unbearable and again both my arms felt dead, I could move them but they just wanted to lie uselessly where ever I put them, happy just to be left there. My left arm was a complete mess and still is, I can’t even lift a glass now, it just doesn’t have the strength. The muscles in my spine were twitching and throwing sharp stabbing pains into the mix of exhausted muscle pain. I could find no peace and no comfort anyway. All my meds taken plus the extra one, I drank 3 large gins and fell into bed at the normal time, but with a feeling that I just wanted anything possible to take my body away, switch off all sensors and give me some peace. My cocktail had done it’s trick and I slept.
Today, well the pain levels are much lower but I feel like a zombie, there is nothing really there as though I am existing in a small space in my head and the rest of me, well it isn’t really part of me. A few hours lost sleep and I am destroyed. This is life with MS, this is what happens if something small and unimportant to the rest of the world, the things you might actually not even remember having taken place, can take me and destroy my life in a few hours. Right now I could give into it with ease but I know for me that is the wrong thing to do, I have to just keep going, keep doing all the things I do and hope that things will today allow me to head for normality. Anything could happen that will not allow me to do that, I just have to wait for the day to unfold and hope that it will remain quiet and will allow me to rest and return to the world.