Inspiration for me

I don’t know what got into me yesterday, but even after I finished my post, which usually clears my head, I found myself still feeling the same. Reading it back, was a huge mistake, I probably should have just left that for a few hours or so, but I didn’t. I found myself fighting tears, tears that had no reason or no result. I honestly felt so alone, it was painful. The stupidest thing about that is, I had Adam here. He is on a weeks holiday just now, so oddly, I haven’t been alone for days. Mind you, I guess that’s why that sort of alone hurts, I could have had a crowd around me, and I still would have felt the same. So I am happy to report, that today, that feeling isn’t gone, but it’s back in its place, part of me, but not all of me.

I am now on my third load of tablets, designed to help with the pains in my guts. The first two failed dramatically. The Mebeverine brought so many problems with it, that the fact that it did help in lessening the pain, didn’t matter. I was left with the worst heartburn I ever remember having. Getting someone who has no memory, to take a tablet twenty minutes before a meal, is now officially impossible. I either forgot to take it or my own speciality, I took it, then forgot to eat. That one produced the worst heartburn, but, even when I got it right, the side effect was still there. The night that it managed to scare me, was the one when I actually woke because I had a mouth full of sick. Not a little bile, but a mouth full of that day’s dinner. I’m just glad that I woke.

I am now on Alverine. This is just day three, and although it isn’t perfect, buy I feel so much better. There is still pain, but it is at the same level of pain as I get anywhere else in my body. In other words, it is at a manageable level. For the first time in about three or four months, I have just had two nights sleep without interruption. For a couple of years now, I have slept for 11 hours straight every night, then suddenly, I was awake every night in pain. I have become so used to it, that I had a set routine, I would go to the loo for a pee, head for the kitchen, have a cigarette and head back to bed. The problem with that was, that I never went back into a proper sleep. I would say it was a mixture of a dozing and moments of true sleep, which just isn’t good for me. If there is one thing that I need it is sleep. Right now, physically I feel better than I have in ages, which is probably why I felt as I did yesterday, it happened, because I could, I wasn’t tied up in nothing but extreme pain.

For two nights in a row, I have slept, nothing got in my way. Then this morning, I woke with the alarm, but at the same instant, I felt the pain in the left side of my back and the top of my legs. It is something that I get a lot, but it was just a bit of a bummer, to find that not all the pain was controlled quite as much as I thought it was. Right now, I’m still in that pain, lessened because I’m now upright, but I know the only thing that will clear it, is emptying my bowels, and that’s probably not going to happen for a couple of days. I know that I was probably just being over-hopeful, but if we don’t hope, what else can we do.

It was a long time ago now, that I made the decision that modern medicine was the thing, I was going to put my hope in. Having over the years, tried almost anything that I could get my hands on, that I could afford, I made my choice. For me, it was partly down to cost. Living in the UK, I have the benefit of free medical care. Living in Scotland, I also get all my medication for free too. Without a doubt, if I had to pay for everything, I probably wouldn’t be so quick to say, “This isn’t working please can we try something else.” I suspect, working or not, I would, at least, push on with what is partially working until, I had taken everything I had been prescribed, before switching. So I am in a luxury position compared to many, in reality, it’s the way it should be for us all.

I have to say the costs that others faced, wasn’t something that I even thought about until I joined social media. It was like crashing into a spike-filled brick wall. Suddenly I found myself talking to people who were having to choose between their medication and basic things we all need to just live. For me, that whole experience was extremely hard, I even went through a spell of feeling incredibly guilty. Here I am surrounded with medication for every aspect of my health, talking with people who didn’t even have access to anything beyond aspirin. I felt it so badly, that for about a year, I stopped talking to people on twitter at all, and closed down my Facebook account. Yes, I still tweeted, but I avoided actually responding and ran a mile from the chance of chatting. Almost daily, people tell me how inspiring I am and how much they admire me. Personally, I don’t get it, as to me, if there is anyone who our admiration should go to, it’s those who live our lives, without the care that we have. If for some mad reason all my medication was suddenly taken away from me, well, I don’t think I would be here very long.

Today, someone asked me how I managed to be so upbeat all the time. Well, now you know. It doesn’t matter how bad I might feel, how much pain I am in, I know that I am lucky. Yesterday was one of my blips, I wouldn’t be human if I didn’t have them. Yes, I was already a positive person, but the above is something that I never forget. I no longer feel guilty for the care that I get, but I do count myself as so privileged to live in a country that even cares at all.


Please read my blog from 2 years ago today – 19/03/2014 – A perfect life

Today so far is a good day! It actually feels good to just be able to say that as it doesn’t often happen, the last couple of days have been kind of draining and I have spent a bit more time sleeping than usual, I guess it made the difference, but I can’t really sleep more every day, as I just wouldn’t have time to know I’m still here and alive if I did. These days I sleep 11 hours at night and between 1 and 2 hours during the day, imagine taking that many hours out of your day, whilst still trying to be active in the world and to spend time with those you love.

It is probably the one thing that I find the hardest, just how little time I really have to spend with Adam. During the week, I see him for less……





12 thoughts on “Inspiration for me

  1. I just recently got my percocet back. I’m allergic to codeine products ie: vicodin, morphine ext. I’ve always had to take benedryl with those. After a yr with nothing my pain is not as controlled now. In the US the government is making Dr’s and patient’s jump through hoops to prescribe opiates and fear of legal trouble if they do! Thank you drug addicts! You’ve made life a living hell for people who really need them! I went years without any insurance and have suffered greatly by it. Now I am disabled and have insurance and still have to go through painful tests to prove I’m in pain to get needed meds and then it depends on the Dr you have and if they’re willing to put your care first. I have a wonderful young Dr. I also had a crappy neurologist. She decided I needed no pain meds until finally my Dr said enough and prescribed them. I know its going to be a few months to get my pain leveled off. Just makes me angry what government and insurance companies make people go through and charge for insurance! And then you still have to pay $100’s to $1,000’s for needed medication. It’s not right at all.


    • It’s not like a single one of us did anything to be in the position that we are in. We didn’t choose to be disabled by health, accident or birth, yet so many of us are now treated worse than we would a pet dog. It’s so wrong, but no one, seems to be able to put the brakes on and simply say enough, treat the sick with dignity and care. It should never be about money, but it probably always will be.

      I’m glad that you have found a doctor willing to stand up for you and that you now get the drugs you deserve. I hate to think what happens to those who don’t have insurance and quite simply can’t afford the costs. My heart goes out to them all, everywhere. I don’t think I would last more than a couple of days without my pain control meds, it can be bad enough some days with them.

      Take care and I hope you pain levels settle soon 🙂

      Liked by 1 person

      • You take care too! A friend tells me constantly when I get mad at myself for not being able to do what I used to, “you’re sick now. You didn’t ask for it. Its not your fault. Rest and be easy on yourself.” That’s hard enough to come to terms with and then we have the government telling us we aren’t sick and in pain, so you can go back to work and we’re going to cut you off and make you! I don’t understand how all of us have become the enemy. We worked, raised kids and personally, I finally gave up all hope of working now. It took me 6yrs. I was determined I was going back to work after back surgery. I went from 5′ 7″ to 5′ 3 1/2″. I worked and carried anything I was told to. And all through it MS was wreaking havoc with my body and the Dr’s thought it was because of all the damage from crushing and disintegrating so much of my vertebrae. I was told it was try immediate surgery or a definite wheelchair for the rest of my life. I want to earn a living not have every govt agency in my life and bank account. I’ve never been a lazy person especially after having kids and then raising them alone. Ok…phewww. Done with the ranting. I apologize for anyone’s feelings I may have upset. I just feel like I’ve done nothing wrong and am being punished for getting sick. 😞

        Liked by 1 person

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