The week begins

Have I mentioned how much I hate the heat? Yes? Well I haaate it so much! It’s so humid! Now I can handle the weather but the humidity is horrible it’s making my chest tight. There is no air,..ok that’s a bit of a silly statement as obviously there’s air or none of us would be alive. But it seems as though there isn’t any and I am just in a constant state of sweaty, damp and sticky hair and body which feels disgusting. It’s as though im a sauna, maybe I should get that body wrap that you wear in saunas and takes inches off you. In weight not height as I can’t afford to lose height. I’m a respectable 5ft 5 and a quarter inches.. And that quarter inch counts alot! Doctors etc laugh when I add the quarter but find it’s true when they measure me and I make sure they write the quarter down. Most people assume I’m taller as I look taller but nope my height is deceiving, probably because I have long legs that hide my squat upper half. Seriously, my belly button is nearer my bosom than should be medically possible. I’m so out of proportion, as though someone pulled my legs and squashed my body at the same time after I was born. It was the 80s after all, a lot of strange things happened so it’s possible it could be true.. 😉

I am resting up now for the rest of the day. I’ve done some tidying and am now knackerd so I will not push myself to the point of pain exhaustion. My new meds make me very tired all day and a bit out of it. It takes me until mid afternoon to feel with it. But the trade off of no leg locking and less pain is more than worth this side effect. It’s a teeny weeny blip that I can easily deal with.

I start my new pain meds tonight, apparently they’re very strong and I can’t take my codeine with them which I don’t mind at all as they don’t work anymore. They’re slow release, much like the morphine tablets and I’m really hoping they help. Seeing as my pain specialtist has only given them to four other people and they can only be prescribed from the hospital pharmacy I have a feeling they are not only strong but effective. At this point I am willing to try anything that has a chance of working and helping me live a life not just an existence of pain, debilitating symptoms and darkness. Life is looking up, and I hope it continues to proceed that way. I have a feeling it will, and my gypsy instincts are rarely wrong 🙂

But you are too young to be so ill..

That is what every one has said to me when seeing me in a wheelchair or finding out I am unwell and live as I now do.

One couple who I spoke to while waiting for the taxi to take me to my assessment last week got quite upset about what has happened. I have known them over 16 years, they are a lovely couple in their 80s and they live on the same landing as me, just a few doors down. They have seen how my son has grown from a 3 year old to a man and always say what a good lad he is and how proud I must be, which is true. The lady stopped and chatted for awhile and said she hadn’t seen me around and wondered what was wrong as I was always out and about and always up early when she was, and got very upset that I am unwell and in a wheelchair. She said how unfair it is and I didn’t deserve it, I was such a good person and when her husband came out he said the same offered help anytime I need it and got upset too. Which in turn made me upset, which I hid but the lump in my throat was there! Here is a couple in their 80s but more spry than most 20 year olds, seriously you would never believe they were that age in looks or ways. But they at 80 are offering me help, which is really sweet and kind of odd at the same time. As in, I am 33 but may need the help from them at their age, it should be the other way around. 

Which in most cases is true, but chronic conditions care nought for age or capability , they strike you down and disable you at any age they choose. They make your body old, unable to work and yes I can see why people say I am too young to be like this. But on the other hand, there are people much much younger than me with chronic conditions, kids, teenagers and I feel that is the most unfair if there is to be an age label. It is bad enough fighting doctors, consultants,medical professionals to get the help we need let alone on top of them schools, school boards, teachers, etc.. And this is what happens, I have heard so many times parents having to fight tooth and nail for their children who have M.E but who aren’t believed by these people and instead are labled ‘lazy’. Or parents being labled as nuisances, over protective and even looked in to by social services because of it! It is crazy, seriously upsetting and what families and children must go through is horrifying, my heart goes out to them. 

Illness cares nothing for age, I read that many years ago, but until I became unwell with my conditions I never really understood the true meaning of the saying. But that’s the way with many things in life, until you have experienced it you never truly understand how anything is. Life can be cruel, it can feel as though you have had more than enough to deal with without the inevitable pressures on top. and more so when you see people living the life of riley with no worries, problems or sacrifices. I myself have thought this at times, knowing people who are horrible, cruel, nasty but seemingly getting away with murder and happily doing so with no problems or worries. But, do we truly know what happens behind closed doors for people? Is the seemingly happy life they lead just that, seemingly happy? We all have our crosses to bear, some are just more obvious than others, such as ill health as it shows in the way we are, look, aides we use. I don’t truly believe anyone is without problems or heartache in their lives, it’s just easier for some to hide it, cloak it over than others.

Constantly waiting

No news about my results yet, oh I really don’t enjoy the constant waiting for results I have endured during the last year and a half.
I appreciate that I am just one of hundreds waiting daily, but results marked urgent obviously don’t mean the definition of the actual word. I can guarantee that I am told my results are ‘lost’ again, giving them three weeks to find them..

I spent most of my day in bed yesterday, I woke with tremendous back pain and couldn’t ease it no matter what I tried. My back had been niggling for a few days and decided to stop teasing and hit me in one fell swoop. This pain has become more and more of a problem in the last six months, it stops me sitting up for more than ten minutes at a time before it spreads upwards into my upper back, shoulder blades and ribs. Then downwards into my hips, knees and legs.
I posted a picture on Twitter showing how a body looks if you have severe fibro, and I can believe it. It’s easy to say you’re in pain, but to get the full picture is difficult for a lot of people to understand. Pictures like I posted show just half of the body and damage it causes daily.

I would be really interested to see an inside photo of my body and what it looks like. The MRI brain and spine scan I’m due to have, well I won’t get to see it but I would really like to. I feel that it’s my body, I have a right to see inside. I will request to look at the scans but I doubt they’ll let me, it can’t hurt to try though!

For now I am going to take some painkillers and morphine, the pain brought on by my back is getting a lil too much. I try never to take morphine as not only does it cause addiction but after awhile your body becomes used to it and requires more and more to help with pain. Today though, I may as well be taking smarties than pain meds so to the morphine I go..!

Was this the way life was meant to be?

I was laid in bed yesterday and let my brain wander to the way my life is and has been.
I believe everything happens for a reason, whether this is because this gives me comfort when times have been confusing or difficult I don’t know. I am a great believer in fate too, too many circumstances have happened in my life for me not to believe in this. Each path I have traveled down could’ve been so very different if I had choosen another route.
If I hadn’t of been such a nightmare of a girl when I was younger and been doing the things I had been doing, would I have become pregnant? If I hadn’t of become pregnant would I have turned my life around the way I did? No, I doubt very much I would have. As my family says, I wouldve been dead within two years if I hadn’t of become pregnant. I agree with this.
I was way beyond any control of anything, anyone and having my son made me become a person who didn’t want to toss my life away. I had this tiny baby, who needed me to be here, be a decent person, to be brought up as well as I could and I did just that. Having my son will always be the best thing that ever happened to me, and I don’t doubt for one minute my life would’ve ended if I hadn’t of had him.

If I hadn’t of chosen the flat I did to live in, school I sent my son to, study the subjects I did, work in the jobs I did, meet the people I did along the way. All of these things paved my life ahead, and if any one of them had been different I am sure the path of my life would’ve been different.

As for the way my life has turnt out, I never expected it to be like this. You know, when you’re young and your whole life is ahead of you and you feel as though there is all the time in the world to do the things you always wanted. That life will continue to be summer days that go on forever, without having a care in the world as you pluck daisys while you sit in the grass. And no matter who tells you to cherish those days as they don’t last forever.. Well such a thought is scoffed at in total disbelief.

Do I have regrets? Yes, without a doubt. If anyone says they haven’t one regret during their life, I wouldn’t believe them. The saying ‘ live your life with no regrets’ is just that, a saying. I don’t believe anyones life has been paved with such perfectly planned dreams that all came through without a hint of misfortune or a single bad time. Am I cynical? No, I’m a realist.

Do I begrudge being struck down with not one, or two but three chronic conditions and a huge possibility that I have one or more yet to be diagnosed. Yes. My ‘dream life’ didn’t include my being disabled by the age of 33. In my dreams, at this age I would’ve been a qualified psychiatrist who had bought or was close to buying my own home. To be driving, have my own garden I could make my own and relax in. To be financially stable, not rich but not worry about a bill coming in and how I could pay it.
It isn’t much, my dreams never were but I know for now I have to let go of them. I have to make a new path in life, and travel down it as best I can while being fully aware of my conditions being there at every turn, and taking a huge part of my life with them.

I refuse to let go of dreams though, ok so they have to change, my life won’t be as I once thought of it being when long ago I lived in summers that lasted forever. My life has never gone to plan, not once. If anything it has been the total opposite of how I thought it would be. It’s been difficult, hard work, strewn with emotional and health upheavals, no stability, no ‘right paths’. But it’s also had great times, love, happiness, laughter and comfort. If my future is also going to be as different as my past has been then at least it will have been a very eventful one that made me feel as though I’m alive, living to the best capabilities I could.
And that’s what’s life is all about in the end, living, breathing and feeling fully, totally, and undoubtedly alive.