I feel so weak. So damned weak and I can’t do anything about it. It’s now 10 or so days since I last spent a full day in bed. No matter what I do or how I try, I don’t feel any stronger than I was on that day I first spent sitting on the settee, not sure if I should go back to bed or if I should turn on my computer. Yes, I can now sit here and write or play a game, but if I need to fetch something, well within seconds of standing my body disappears around me. At first I kept telling myself that all I needed was time and food, that my strength would return. It hasn’t. Daily I make my lists of things I have to do and almost immediately I start shuffling everything on to the next hour or usually the next day. Each thing is pushed until I couldn’t put it off any further. The bread I made on Sunday, well it was planned for the Tuesday before, I shuffled it until I had no more choice. If I am honest, that movie I put on, on Sunday morning was meant to be my excuse for not doing it. I wouldn’t have time to make bread, watch TV and get my afternoon nap, so don’t make the bread. When I realised what I had done, I got angry and despite the fact that I didn’t have the energy, I pushed myself. I made my body go through all the actions and it complained all the way. It feels as though most things I am doing is just like that, going through the actions. Adam has caught me on several occasions when my “I’m fine face” slipped. He has known that there is something right, but I kept hiding it as I don’t want him to worry. I saw enough of his worrying when I was flat out to not want to see it again. So why am I writing this? Because last night I finally spoke to him about it.

I don’t remember feeling this weak before. Maybe once, when I had glandular fever, but that is so long ago that it’s hard to know what I remember and what I think I remember. My body doesn’t seem to have any strength left in it. I’m not talking about the strength to lift something heavy, I am talking about the strength to just do everyday things like drink a glass of coke or brush my hair. There is nothing in me that says I can do anything other than exist. Sitting here writing, playing games or sitting on the settee watching TV is all I seem to be able to manage, but even then, my body objects to the effort it takes. It’s not like being tired or fatigued, it’s just a constant weakness that isn’t willing to let go of me. I keep sleeping and eating and hoping, yet nothing changes, nothing gets better. Being weak as a kitten isn’t something that comes naturally.

At times I feel fine, I feel as though life is returning, then I stand up. An hour of sitting still and just getting to my feet is enough for my body to laugh at me and slap me down. I have lost count of the number of times that I have headed to the kitchen, or bathroom to find when I get there that I start to doubt my ability to come back again. Of course I do, it doesn’t matter how I feel, I just keep going, but it doesn’t do me any good, I feel so pathetic. My chest is still clearing and my cough is settling, but I am still using my inhaler more than I would like. Even once used, I still have no energy, no strength, just lungs that let me keep breathing. I don’t understand what happened to me when I was hit by that exacerbation but it hit me with some force and I haven’t recovered.

In the last couple of weeks in dribs and drabs, I have written into my posts some of the details of how I still don’t feel myself. I wasn’t doing it on purpose, I think if anything I was telling myself. I do that a lot, write something without the thought that many think is behind it, only to reread it and realise that I was being honest about something I wasn’t even aware of thinking. I keep checking myself, trying to see if I could say that it triggered a flare of my PRMS, but it isn’t like any flare I have had before. Yes, there is an increase of twitches and spasms, but they increased when my lungs decided to shut down and just haven’t gone again. This isn’t even a sleepy phase, as I don’t feel tired, just weak, washed out and useless. If I go to bed, yes, I sleep, but I don’t wake feeling any different. Mornings are better than later in the day, but not hugely, just enough to notice. By lunch time, I feel like I am made of tissue.

I am so fed up of feeling like this. That’s why I spoke to Adam last night. I caught him once again offering to make me something to eat. He too, just as I have been, was trying to feed me to build up my strength. I fronted him out on his theory, then told him exactly what has been happening, how I feel and how wrong it all is. I knew he had spotted it, but somehow just like not directly writing about, not speaking about it somehow made it invisible, still happening but not real. I have tried so hard to not whinge about it, to go on and on about how rotten I still feel, especially not to Adam as he has been so happy that I am no longer locked in my bed oblivious to the world. I didn’t want to burst his bubble and tell him that yes, I am a thousand times better than I was, but I still have another thousand to go. Every day I have done everything that I could think of to build myself up, hence the fruits and nuts, the granola for breakfast and my still drinking milk. I even for the first week took one of the multi-vitamin tablets that Adam bought for me a while ago. Nothing has made the slightest difference. I have gone with my new routine to the letter, stopping and just not doing something if I didn’t feel up to it. Apart from on Sunday, I haven’t pushed myself at all, yet there has been little improvement past the first three or four days.

I apologise for whingeing, for moaning and sounding like a spoiled child, but I guess that is how I feel today and yesterday and the day before. I feel so much of the time like just bursting into tears, not because of anything that is happeing, but this weakness, just makes me weepy. The more wound up about it I get the more I upset my lungs. I keep finding myself either shallow breathing or taking small sharp breaths, I even managed yesterday to upset them that much that I was short of breath whilst sat still. All I want is enough energy to live the restricted life I have lived for years. I want to be able to walk around my flat, fetching things for myself, to be able to put on or take off my payjamas without feeling I have just run a marathon. Every day now is as energy destructive as it was to go to the hospital a few weeks ago. Going out always takes a few days to recover, but I’m not getting that recovery time. If my appointment to see he COPD consultant was to be this week, well I honestly don’t know how I would cope with it, or what would happen to me afterwards. It sounds odd, but I want to be well enough to go to the hospital when it comes around.

I know this might be a totally normal recovery from an exacerbation, even though it feels anything but, but I can’t be sure. This might be the best I can ever expect to feel again, but I just want to know. If this is it, well, then it’s a case of getting my head around it, just as it has been with everything else in my life. It is this nowhere world that I hate, I can learn to live with anything other than being caught in limbo.

Read my blog from 2 years ago today 07/07/2013 – Looking ahead to some rest

There are times that appear where life is so full of things happening, emotions being strained and life not giving you a second to think or breath. These last couple of weeks have felt just like that. I am not holding my breath, but I hope it is over, for a while at least. I have this great urge to just have a time where I can gather back my strength and where there are no tears or……..