For many years I've been keeping diaries of my experiences through life, wondering what the impact would have on my future, mulling over whether or not choices I was being 'forced' into making at that time would have an effect on my life and if so what. Most of the time I have found the experience of putting my thoughts down on paper to be therapeutic and make more sense of what was happening. Other times it just gave me more time to think about it and get stressed! I'd not been to uni, would I ever be successful, I'm not married with kids, is it all too late etc?
This Blog is not about wanting sympathy; I don't want people to think that I'm brave and I certainly don't want congratulating on anything. The ONLY aim of this blog is to try and get other people to understand the up-hill battle of getting out of bed in the morning, looking out of the window, seeing that the sun is shining (it does happen sometimes you know!) , knowing that you live in a beautiful part of the world and are surrounded by so many people that care yet for some reason (best known to medics, and they're keeping it to themselves!) unable to feel the happiness and joy that you know should be there.
If you are unwell and have a diagnosis it doesn't mean that it's great news because they know what they're dealing with. It doesn't mean that life has changed dramatically for the better since I'm on a new regime of meds etc. It DOES mean that I can relate to people who I couldn't before. It wasn't that I didn't want to, and I did believe them when they told me they felt really ill, I just didn't 'get it'.
I was 15 when I was diagnosed with epilepsy, I was informed that it would take approximately 18months to get the seizures controlled. In that time (13 years) , my step father died, I lost contact with members of my extended family who vowed they would be there 'what ever happened', and I got 'stuck' in the NHS Drug dealing service (there's no other way of putting it) where they would prescribe something to cure one thing which then triggered something else. This in turn needed further medication etc. At one point I was on 9 different prescribed drugs a day 5 of which were to combat the side effects of the other 4. I am certainly aware that there are people out there a lot worse off than myself, but what many don't realise is the number of people who are out there who don't KNOW any of this. Our country is so obsessed with the banking crises and various other things to pull the wool over people's eyes that they don't realise the huge control the drug companies have, the money that they pile into hospitals and training etc and I'm pretty certain the sponsorship of various illness trials and research. It got to the point where I was asking, do they want to find a cure for this? (but that's another blog!)
I digress, nearly a year ago I decided to put a CD together with the trio I sing and play with www.Pastal.co.uk and to try and raise awareness of epilepsy but also to raise some money for the animal rescue 'Many Tears' who my Mother and I foster dogs for. As time went on I became more and more lethargic and although I loved doing it I was physically struggling. I couldn't get out of bed in the morning, I was being violently sick, drinking pint after pint after pint of water and just bloating up until I would get freezing cold, my temperature would go up through the roof and I would pour with water from every pore imaginable. No one who hasn't seen it would believe it, my hair would be dripping with water while I was shaking with cold and not knowing what to do with myself. After a 4 day whirlwind tour to promote and launch the Album (Brecon, Leadbury, High Wycomb, London then gig in Broadhaven) , everything hit me at once. That time of year = 'Nuro Virus' so it was easy to treat I just felt really sorry for everyone else who had been around me. Yet it didn't go away, and no one else came down with it.
Four weeks later I was taken for the high light holiday of my year to Padstow for Mayday, anyone who hasn't been should go! I had loved it for the last four years, the sea air, walking distance from town, the carnival spirit, the peace and tranquility of the place was heaven. Or it always had been. This year I could hardly put one foot in front of the other. I was shuffling along doing my best to make it from one seating area to the next, outwardly reassuring everyone I was fine whilest inside panicking and feeling that my legs were slowly but surely packing up on me. To a certain extent that was bearable, the pain that shot down my nose and caused me to feel my head was exploding when I played my clarinet wasn't. It was a nightmare. As the days of lemsip and anti sickness tablets failed to make a difference we came home. Those days turned to weeks and then months and I didn't give up on the selling and marketing and interviews for the CD and though I put my 'going out face' on I got more and more scared, something was happening to me and I had no control over it. My body was seizing up on me.
The one thing that was more noticeable to me than anything was the support that I had, I was overwhelmed by it, I was also rather suprised at certain people who either couldn't cope or didn't want to who having previously appeared to be friends, disappeared into thin air. Then there were those who I hadn't noticed. Those who would look across the room and even in THEIR time of illness would get up and come over and sit and talk to me. It was times like that when I realised that I was a very lucky girl. For every person who once wanted to tell me how ill they were and were now blanking me, I had several people texting, calling, understanding if I couldn't talk to them because I was too weak and just patiently waiting until I felt better or at least sociable again. It's taken me a long time to realise it but I guess when someone goes from being the 'that's only Steph, she can cope with anything. She'll be fine'. To being in a wheelchair or Zimmer frame it could be a wake up call that sometimes, people can't cope. That regardless of the laugh and grin there is only so much trauma physically/ mentally that someone can cope with. Only so many legal drugs being pumped into you by the NHS that the liver can manage to excrete, the rest building up like poison and every morning and evening when taking the tablets KNOWING that you're poisoning yourself yet can't stop taking them as you're told by the doctors what will happen if you do........ ' Reading this I'm realising that there are people put in prison for behaviour like that but it's called drug dealing on the streets and 'pushing'. It's a vicous circle worse than only a few other traps I can think of, who do you go to when you're ill?
After a few weeks of getting weaker and weaker I was finally diagnosed with Adrenal Fatigue (Probably Addisons Disease). It's taken a long round about way of me getting to this point but I needed to fill you in before I could go from here as there was so much prior to this diagnosis which will be discussed but would never have made sense. Addisons disease is unpleasant, debilitating and not very often heard of.
If you can bear with me, this is going to be my diary of balancing taking enough cortisone steroids and adrenalin to get out of bed, fostering dogs for Many Tears Animal Rescue , playing music and getting from day to day until hopefully my dreams come true when I am well enough to get a job working full time with rescue animals, spending time with them and one incredible man in my life who has stuck by me through the most horrific (for him) times when he would have had every reason to turn and walk but he hasn't. He's still here, looking after me, caring for me, taking me places I've never been, taking me back to places that I fell in love with and most of all, being the best friend I could ever have asked for. If it wasn't for him, I wouldn't be here as he came along when everything was dark and I just wanted to bail out. Dragging me back from the brink by using music, love, friendship, targets, focusses and the frequent kick up the preverbial, he really has given me every reason to be here.
Everybody needs (in this order) a rescue dog, an Alan, and Music in their life.
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