I can’t believe that Thursday is here already, somehow everyday this week seems to have been cluttered and so busy that I haven’t felt as though I have rested at all from waking to eventually sleeping for the night. Yes I have been having my naps, but even then I don’t seem to have brought me the relaxation that I feel I really need, somehow despite of the majority of every 24 hour period has been spent asleep, as usual, I feel as though I haven’t slept at all.
I had never really appreciated the value of sleep, as I have written many times, sleep wasn’t something I really bothered with or needed, so when I first found myself tired and unable to stay awake nearly all of the time, it was a real shock. It was always one of the things about my early flares that stood out to me and told me there was something wrong, tired wasn’t something that I as a person did, even as the mother of a two small children. Looking back I know that it wasn’t something I pushed hard enough with my doctors over those years, just saying I was tired without quantifying that normality was just 4 hours and outside that I never stopped, as I was doing what what was expected of me. I cooked, cleaned, made our clothes, wine and bear, not from kits, gardened, knitted, did all the DIY and kept adding more and more skills every year, whilst trying to bring up my family, alone most of the time, being tired was a huge problem. I still remember the first time I was crippled by tiredness and crippling was exactly what it was. I found myself lying on my bed in tears, my body didn’t have anything left to give, I honestly didn’t know how I was going to deal with my 5 month old daughter who was sat in the next room, inches from the TV, the one place I knew she was safe. I had only been up for 3 hours and I had struggled through every one of them, there were still all the nappies and other laundry to be done with no automatic washing machine, plus I hadn’t even started on the housework. Going to the doctor with my daughter and pregnant, saying I was so tired I was crying, didn’t exactly get much sympathy, I was basically dismissed, just told to slow down and rest as what did I really expect, it was the start of a pattern that went on through my life.
I know everyone is different but for me it is the one constant in my life, every flare I have ever had, included being so tired that everything was an effort. I grew used to those spells when the world was this alien place I had to deal with, where there were not enough places to sit and rest or enough people who would offer assistance when I was clearly struggling to do something. I learned to push on, to cover it up, to not let those moments where I let myself down as unable to deal, to visible or to happen too often. By the time I was in my 30’s I had convinced myself that I was a wimp and the only thing I could do was to stand tall and act like everyone else did, they had to be feeling just as I did as the doctors said there was nothing wrong with me, if they could cope, then so could I. Believe me it is so hard to function like the rest of the world when every muscle is screaming that they can’t move once more, or that if you let yourself stop for a second, you will never move again. I lost count of the times that I would reach home with tears flooding down my face, or how often I climbed the stairs to my various homes, on my hands and knees, stopping at almost step to rest. Being a DJ was a blessing, night time work for 4 to 7 hours, perfect, plenty of time to sleep when I needed it, or live to the full when I didn’t and I managed for 7 years perfectly, but age meant I had to find a career that didn’t care if I aged and I did.
Sales was at first great, I could earn what I did as a DJ and still part time hours, but 2 years in and I was hit by my worst and my final big flare before life went mad. For the first time I had to stop working, I was off for 2 months, my doctor said it was a virus, gave me painkillers and told me to rest, I knew he was wrong, but when things are at there worst the last thing you are able to do is argue. Don’t get me wrong, I tried, but when your brain is as tired as your body is, getting your point across is almost impossible. Tired isn’t just a physical thing, tired is a life thing, you name it, what ever function you want to use, is tired. You can’t think, you can’t talk, you can’t move, nothing is working as it should even your eyesight fells tired. Add in all the other symptoms and life is a growing hell, one that for me was always spent alone, so I know when others tell me they don’t have and “Adam”, just what they mean, I didn’t always have an “Adam” either. There is only one thing I would say about if having someone with you helps when you are ill or not, is it depends on who that person is, trust me some can actually make it worse. What I have learned is, if you don’t have an “Adam”, you are better off alone.
Tiredness brought on by health isn’t the type of tired that you can climb into bed and sleep off, you go to bed tired and you wake up tired. Your body may be screaming in a language you think you understand, but we don’t. This type of tired is so deep, so complete and so devastating that there is no escape from it and even worse there is no way of bringing it to an end. For about three years now I have slept between 11 and 13 hours every single day, tired or not, as I have a new definition or tired. Tired is life, every day life, I am never not tired, but there is a step up, it’s a huge step up, it when your very soul is tired and you feel like you have nothing left to give. You crave sleep, all you want is to go to bed and sleep, not for an hour or ever 12 or 24 of them, you just want to sleep forever. Note, I am not talking about dying here, I am talking about sleeping until your body actually wakes because it is awake, not because it’s time to get up, but to achieve that feels as though it will take forever. The sad thing is that life has taught me the same hard lesson over and over, and not just about being tired, it doesn’t work that way. If life worked on that simple lines well life would be easy, you can’t sleep this tired off, no matter how hard I try, or how long I stay in bed, I am always tired.
My RRMS turned into PRMS 13 years ago, I don’t think that I have had a single day since that I haven’t been tired. Tired is now my life, all that ever changes is intensity. I may have drawn the short straw when it comes to my health, but I think I am still holding onto and pulling the straw that brought my husband to me, he knows and sees and can read, just how tired I am, he can’t take it away, but he gives me a reason to wake each day, no matter how tired I am.
Please read my blog from 2 years ago today – 27/11/12 – Crossing a milestone
Two Rooms Plus Utilities 