My first adrenal Crisis was the most terrifying experience of my life, it's no exaggeration to say that I thought I was going to die, please don't think i'm being a major drama queen, I wouldn't wish it on my worst enemy. Here is a little of what I remember:
The spasms start again, this time from my neck. I can feel the muscle wrench tight as the agony strikes down every muscle and every bone rattles with the freezing cold that I can feel from my inside out. Sweat pours out of me but I need more blankets, the pain is endless and I can’t do it anymore, my legs tighten and my feet cramp. My hamstrings and thighs are burning with pain. I relax. Warmth spreads around me, 30 seconds later it happens again, this time I’m so sick and crying. Water is pouring out of my ears and nose, I am wet through and the only movements I make are out of my control yet I'm awake and aware I don’t have energy left but somehow I shout for help. Don’t let me die, just get me some help.
A nurse appears from around the corner and takes my blood pressure, it’s 180/90 and rising and my temperature, it’s slightly raised 37.8 and rising, I’m crying and reassured to relax and that a doctor will be with me. Dr Mohammed turns up, he’s lovely, he’s calm, he’s reassuring …. Until he turns to the nurse ‘Nurse I need this patient canulated now, she is seriously ill and I can’t get any medication into her’ I start to panic ‘please’ , I whisper, running out of energy, “ I really need you to help me cos I really feel quite ill” His manner is gentle and calm, “ you’re a brave girl, you will be fine I will look after you, can you tell me when you started to feel like this?” For the first time I feel completely out of control. There is something going horribly wrong with my body and I can't stop it. The Doctor speaks again, very gently and suddenly a calmness surrounds the room and I feel at peace, he’s going to make it better, it’s all ok. “ I gather my strength… “it started on Thursday….” I begin, feeling that all will be ok, until “THURSDAY???? He yelps? Why are you here NOW? Why not on Thursday??” oh dear, maybe not so calm. “you should have been in here on THURSDAY!”
I try desperately hard to explain to him that I’ve always been scared of hospitals and that Doctors blame me for being a hyperchondriac and I thought I only had a cold. He calms down and begins his work, giving orders to nurses who glare at him as he is frustrated that there is only ONE nurse available in resuss and she isn’t ‘qualified to canulate’. As the doctor reassuringly puts a needle in one arm and Alan holds it still Mum holds my hand. I’ll be ok, the doctor’s said I’ll be ok. It takes 40minutes. 40minutes of Cramps and full body spasms from my head to my feet and my body pouring with sweat. My trousers and the blankets are stuck to me. It’s the third change in blankets since arriving at the hospital. I start to feel warmth. In my hands first and my head and tummy. Gradually it spreads, the adrenaline and steroids are kicking in. Things start to become clear, visually and mentally. I see the doctors face clearly for the first time. He has dark skin and a kind look, mum’s eyes are red. Alan is talking to me, telling me i'll be ok.
They wait for my blood pressure to return to normal and take me to a ward. ACDU, the Adult Clinical Decision Unit. I lay on a casualty trolley in cold wet blankets attached to a drip giving me what my body can’t produce anymore due to the complete ignorance of Doctors who refused me ONE blood test. ONE blood test, two years ago and this would never have happened. Now, aged 28 I have a zimmer frame for when I cant take the weight on my legs. At the moment I hope to at some point have the strength to sit up unaided. I think of music. Desperately thinking I’ll never play again. The one thing that kept me going and I’ve lost that. People message me and call me and I reply to messages but not phone calls. I don’t want to talk to anyone. 3 days later and with the help of Mum or Alan I can make it from my bed to the ward bathroom. I want to go home, I want my own bed. 2 people have died on the bay since I’ve been here and it makes me feel I’m extremely ungrateful. I feel even more guilty as I think that even though they were elderly they were still someone’s relatives and I need to get out of there and pull myself together.
I go home with the permission of my consultant. Two days later I awake with a sore throat, I can’t walk, I can’t even use my frame, my hands won’t take my weight. I stagger to and from the bathroom until I can’t move anymore. The sweats have started again. I’m still on the anti biotics that I came home on, I can’t understand the relapse and the lack of strength. I need to get better. I must get better. I could cope with fits but I can’t cope with this, there is no let up. Alan and mum towel me dry and change my bedding and clothes, wet through with sweat but icey cold to the touch. Hushed discussion and it’s decided to call the Doctors on call. Alan has given my steroids and it’s not made any difference. The doctors wonderful, explains to mum to dial 999 and state ‘Adrenal Crisis’. After what seems like hours the paramedics arrive and after doing their checks get me into the ambulance. They need to administer Hydro Cortisone to kick start the adrenal glands. Again, they are calm and reassuring. Again I go through the same ritual. This time I’m questioned as to WHY did I drop the dose of my steroids back to normal!? I probably look as confused as I feel as the doctor calmly explains that while I am on antibiotics and run down I should be on at least double the dose of normal steroids and if I’m doing anything stressful I need to treble the dose. This comes from a team of doctors who for years have been telling me there is nothing wrong. Better late than never? Maybe, doesn’t feel like it at the moment though. So Epilepsy may be in the past and Addisons is my future but Epilepsy (if it ever was that) was a lot easier to deal with….. People had heard of that!
Thursday 29 November 2012
Tuesday 27 November 2012
things change too fast
Ok so it was only the day before yesterday that I updated you but so much happens so fast in this life of music, drugs and rescue dog world!
First of all I'm pleased to say that physically I feel a lot better, having gone from feeling like I was going to die (nothing like a bit of drama ey?) on Sunday to being certain of it yesterday, I'm feeling on the mend today. All because I missed one dose of medication on Saturday. Madness. Or at least it is to me so heck know's what it must appear to others. I didn't realise that missing one dose of steroids meant I would play catch up for a few days especially having used so much cortisol and adrenaline during the gig I played on Saturday. I'm hoping that with another good night's sleep and doing nothing tomorrow I will be even better come Thurday. The problem is as soon as I feel better I do more, then I set myself back again. The symptoms being exhaustions and cramps with sweats being the last and dangerous bit people can't always see what is happening so although I can say I don't feel well, I need to go home etc, it's normally only when the sweats start that the 'panic' sets in and it's suggested that we 'pack up and go'. I can understand this but by then it's really difficult as it's nearly impossible for me to put one foot in front of the other.
Today was mostly spent sleeping inbetween waking up we through with sweat but at least I was able to sleep and not feel bad about it. It gets to the point where I feel guilty for sleeping when I know I should be doing other things, this in turn keeps me awake, then I get ill and need more medication and more sleep..... vicious circle!! Today was one of those 'live for the moment' days when I managed it. Laying on my back I realised how comfy I was and that there was absolutely nothing that needed doing that couldn't wait and that although I felt quite poorly I was warm and the horrible feelings would pass. It's been a very long time since I've been able to get into that mind set and it's not easy but it does help. Addisons is a condition which I am still trying really hard to get my head round. Having been diagnosed with epilepsy for so many years I thought that was hard but inbetween seizures I was fine, now as it turns out it could easily have been my adrenal glands failing that were causing those fits and there ISN'T any time when I feel fine, although i'm hoping to be able to reach the calm state of mind I acheived today more often.
Changing the subject, quite dramatically when I started helping in the 'world of rescue' dogs I went into it with an incredibly short sighted vision of the type of people we would be likely to meet. The type who are kind, understanding, want to help animals, want the world to be a better place.... a bit like the Miss World competitions I guess but without the bikini's. What a wake up call it was and continues to be. We are fairly fortunate (although there are moments) with the rescue we help with but like in all walks of life there are people that you get on with and those you don't. But, don't judge people through facebook or forums. Get to know them properly or if you have nothing pleasant to say then don't. If someone posted something I didn't agree with and I didn't like it but it wasn't harming anyone, I'd just ignore it but over the last few months I've had messages from people who should have their mouths gaffer taped and they should have to ask permission before they are allowed near a computer.
Everyone has their problems in one way or another, some are open about them, others aren't. I try not to 'go on' about mine but being such a rare condition (one in 4,500ish) and a potentially very suddenly fatal one I feel that if I can help just one person feel that they're not alone then it's worth it. As I sit here wondering whether or not to attend a local music session I have to take into consideration that it's a 40minute journey there, 3 hours playing (on and off) 40 minute drive back, the carrying of my cello into the building and that's AFTER I've found the energy to get out of bed, showered, dressed and eat food. All things which I took for granted for so long now have to be planned to military timings with my tablets and how long each dose will last because if it runs out while I'm trying to do something I'm completley stuck. Water (sweat) pouring out of my ears, nose, eyes, forehead, calf muscles and anywhere else you can think of but the icey coldness and being completely incapable of getting warm is the worst feeling.
People continue to reassure me that it's wonderful now that they know what they're dealing with, well maybe when i'm on the correct dose of drugs and can start to lead the type of life I had before I'll be able to see where they're coming from. There are still some days when I struggle but today has been good. I've not acheived anything, but i've had moments of struggling during the day, rather than a really bad day with the odd good bit. Things are on the up.
We have 2 pups with applications for their forever homes in. It's Tuesday, they don't go out on the 'run' to spread about the country until Sunday so who knows who else could be applied for. It would mean the world to me to see these pups through to their forever homes. I hope who ever is fortunate enough to foster them realises how much we love them and the reason why we are prepared to pass them to other fosterers is to free up space to help more dogs....... not to pass them on. It's really difficult. They've been here since before their eyes opened. Now at the cheeky 7 1/2 week old stage they are adorable. Every dog we've had through here we've treated as our own, loved and nutured it until the right home has come along. As much as I know these people love dogs, how do I know they'll pick the right home? I know deep down that it will all be fine and will all work out for the best, it just may take longer.
Signing off now as starting to flag but even so.......
A slightly happier
Steph
First of all I'm pleased to say that physically I feel a lot better, having gone from feeling like I was going to die (nothing like a bit of drama ey?) on Sunday to being certain of it yesterday, I'm feeling on the mend today. All because I missed one dose of medication on Saturday. Madness. Or at least it is to me so heck know's what it must appear to others. I didn't realise that missing one dose of steroids meant I would play catch up for a few days especially having used so much cortisol and adrenaline during the gig I played on Saturday. I'm hoping that with another good night's sleep and doing nothing tomorrow I will be even better come Thurday. The problem is as soon as I feel better I do more, then I set myself back again. The symptoms being exhaustions and cramps with sweats being the last and dangerous bit people can't always see what is happening so although I can say I don't feel well, I need to go home etc, it's normally only when the sweats start that the 'panic' sets in and it's suggested that we 'pack up and go'. I can understand this but by then it's really difficult as it's nearly impossible for me to put one foot in front of the other.
Today was mostly spent sleeping inbetween waking up we through with sweat but at least I was able to sleep and not feel bad about it. It gets to the point where I feel guilty for sleeping when I know I should be doing other things, this in turn keeps me awake, then I get ill and need more medication and more sleep..... vicious circle!! Today was one of those 'live for the moment' days when I managed it. Laying on my back I realised how comfy I was and that there was absolutely nothing that needed doing that couldn't wait and that although I felt quite poorly I was warm and the horrible feelings would pass. It's been a very long time since I've been able to get into that mind set and it's not easy but it does help. Addisons is a condition which I am still trying really hard to get my head round. Having been diagnosed with epilepsy for so many years I thought that was hard but inbetween seizures I was fine, now as it turns out it could easily have been my adrenal glands failing that were causing those fits and there ISN'T any time when I feel fine, although i'm hoping to be able to reach the calm state of mind I acheived today more often.
Changing the subject, quite dramatically when I started helping in the 'world of rescue' dogs I went into it with an incredibly short sighted vision of the type of people we would be likely to meet. The type who are kind, understanding, want to help animals, want the world to be a better place.... a bit like the Miss World competitions I guess but without the bikini's. What a wake up call it was and continues to be. We are fairly fortunate (although there are moments) with the rescue we help with but like in all walks of life there are people that you get on with and those you don't. But, don't judge people through facebook or forums. Get to know them properly or if you have nothing pleasant to say then don't. If someone posted something I didn't agree with and I didn't like it but it wasn't harming anyone, I'd just ignore it but over the last few months I've had messages from people who should have their mouths gaffer taped and they should have to ask permission before they are allowed near a computer.
Everyone has their problems in one way or another, some are open about them, others aren't. I try not to 'go on' about mine but being such a rare condition (one in 4,500ish) and a potentially very suddenly fatal one I feel that if I can help just one person feel that they're not alone then it's worth it. As I sit here wondering whether or not to attend a local music session I have to take into consideration that it's a 40minute journey there, 3 hours playing (on and off) 40 minute drive back, the carrying of my cello into the building and that's AFTER I've found the energy to get out of bed, showered, dressed and eat food. All things which I took for granted for so long now have to be planned to military timings with my tablets and how long each dose will last because if it runs out while I'm trying to do something I'm completley stuck. Water (sweat) pouring out of my ears, nose, eyes, forehead, calf muscles and anywhere else you can think of but the icey coldness and being completely incapable of getting warm is the worst feeling.
People continue to reassure me that it's wonderful now that they know what they're dealing with, well maybe when i'm on the correct dose of drugs and can start to lead the type of life I had before I'll be able to see where they're coming from. There are still some days when I struggle but today has been good. I've not acheived anything, but i've had moments of struggling during the day, rather than a really bad day with the odd good bit. Things are on the up.
We have 2 pups with applications for their forever homes in. It's Tuesday, they don't go out on the 'run' to spread about the country until Sunday so who knows who else could be applied for. It would mean the world to me to see these pups through to their forever homes. I hope who ever is fortunate enough to foster them realises how much we love them and the reason why we are prepared to pass them to other fosterers is to free up space to help more dogs....... not to pass them on. It's really difficult. They've been here since before their eyes opened. Now at the cheeky 7 1/2 week old stage they are adorable. Every dog we've had through here we've treated as our own, loved and nutured it until the right home has come along. As much as I know these people love dogs, how do I know they'll pick the right home? I know deep down that it will all be fine and will all work out for the best, it just may take longer.
Signing off now as starting to flag but even so.......
A slightly happier
Steph
Sunday 25 November 2012
Nearly a week on.........
The weather has been terrible, the days are as dark as what the nights should be, I am constantly battling to avert an adrenal crisis by ramming more steroids down my throat and trying to focus on how lucky I am....... Sometimes it's pretty hard!
Last March the trio I sing with (as mentioned in previous blog) bought out an Album for Many Tears Animal Rescue. Now the nights are cold and depressing we thought we'd get back in the studio again. Sounds posh and fun. It can be. But it's hard work. For someone like myself who can busk along to practically anything I don't know why but I suffer from 'red light fever'. The minute I'm counted in to record you can guarantee that a wrong note is produced, or if I get as far as the last few bars I mess up the ending. This isn't helped because even though it's only the three of us it still uses adrenaline and I can't replace it as quickly as I'm using it so tire a lot quicker than the other two! On the whole they are incredibly patient with me (more so than I am!!) but I know that it must be really frustrating on occasions and I'm grateful that they put up with me and the obstacles that get in the way. They are 2 special people.
For the last 5 weeks we've had a litter of eight pups in our house. Their mum was rescued by Many Tears and they all came here. When the babes were 4 weeks old their mum went on strike and decided under no circumstances what so ever was she going to feed them anymore. She'd done her bit and I can't blame her. She didn't have much milk and had been struggling. We weaned the pups (probably quicker than normal but it had to be done) and they are all thriving but the sad thing is, 2 have pretty limited vision. They are now 7 1/2 weeks old and looking for forever homes to go to when they are old enough (in a week or so) but to see the 2 with visual problems find their way around our living room as they remember where every bit of furniture is and where the toy box is, is rather emotional. These pups will never know any different but what will life be like for them? I can only hope and pray that the family that applies for them and get the go ahead will look after them and treasure all the special little moments throughout the dogs life like you would a child. If I could keep them I would. If I kept them it would mean not fostering dogs anymore. Can I justify not helping anymore dogs to help one dog whose perfect home could be out there somewhere? It's an argument I have with myself all the time. The problems incurred with a large litter (8 isn't that big for a large breed but big enough!) are often avoidable if breeding is responsible. Sadly with strays and pets who escape etc this isn't the case. We have no idea who the dad was or what conditions they were born in, the mum was incredibly thin and malnurished. The important thing now is these pups are happy. They have warmth and full tummy's, lots of toys and regular cuddles, they will have happy lives full of love.
We did a gig last night. It was a cracker. Great audience, lovely atmosphere and wonderful food. We didn't play too badly either!! So everything in my life appears to be coming together yet I can't get my head into the 'feel good' bit. Once upon a time in the days before depression set in (there were days!!) I could seperate the bad bits from the good and focus on the positive.
Today was a really hard day. I think part of the diffficulty I have is accepting that it's hard because I did a gig last night and I'm paying for it now. So many people read my Facebook page or see me out and think that it's better, not realising that yes I attended a session or did a gig but that was the only thing I did for 3 days apart from sleep and take pills. Having spent most of today fighing off having to be admitted to hospital with Adrenal Crisis and putting Mum and Alan through hell I at last succumbed and took extra medication. Tablets scare me. I don't have a problem swallowing them, I do have a problem with the long term effects that they have on people physically. The short term ones have been hard enough to get my head round. I've never been the prettiest girl in the class and to go from the weight I was to it increasing by 3 stone in as many months is really difficult to deal with. People say you can be fat and happy..... I'd like to hear from you please and tell me how!!?? I will accept that I would rather be the size I am at the moment and be able to move than be a size ten and be on a zimmer frame, how ever there should be a happy medium somewhere.
Having spent most of last week sorting out my bedroom so that I could relocate upstairs allowing us room to foster MORE pups and dogs (helping my dream of running a dog rescue come true) I realised that I can't manage the stairs like I thought. Within three trips up and down I was needing to lay down with my feet higher than my head and swallow Hydrocortisone tablets like they were smarties. No it's not because I was unfit, it was just the physical action of packing each box and carrying it up the stairs. Something which I would have taken for granted only not so long ago. Now I have the problem of sleeping downstairs but having my clothes upstairs! Luckily I have a very understanding mother who is in the process of helping me try to decide..... do I continue to move things upstairs to help more dogs but do it slower or, or I bring everything back down? In the meantime she helps me by getting my clothes (already moved up) and bringing them down. I couldn't function without her or Alan, something which many people may think I take for granted but not one single day goes by when that is something that I do realise. How lucky I am to have them. As things get darker in my mind I try to focus on the good bits, I can hear a flock of seagull type noises from the living room, it's the pups tea time. Their body clock is more reliable than big ben. I know then that it will be puppy cuddle time and there is nothing more therapeutic (apart from playing music) than having an innocent, disabled (yet not because they know no different) pup fall asleep on your lap making little snuffle noises. If there is anyone out there able to offer a rescue dog a home, please do. It's hard work, it's frustrating, it's heart breaking but the rewards out weight it all. Go on, give a rescue dog a home.
My LATEST panic is at the age of 28, I used to be full of energy, although never terribly accademic very career driven, I knew where I wanted to be but, where am I and where am I heading? I have a younger sister who always appeared so laid back not caring where life was taking her who now owns her own house and is climbing the career ladder. I'm treading water to get from morning to night and mulling over where the heck things went wrong. I think I've just hit the nail on the head, perhaps if I looked to the future and if I do find myself looking bac focus on what I HAVE achieved things would look start to seem more positive and tomorrow is a new day. I blame the time year..... Tis the season to be jolly my a**e :-D
p.s This is being 'published' as a stream of consiousness...... all errors gramatical and typo's will be corrected shortly
Last March the trio I sing with (as mentioned in previous blog) bought out an Album for Many Tears Animal Rescue. Now the nights are cold and depressing we thought we'd get back in the studio again. Sounds posh and fun. It can be. But it's hard work. For someone like myself who can busk along to practically anything I don't know why but I suffer from 'red light fever'. The minute I'm counted in to record you can guarantee that a wrong note is produced, or if I get as far as the last few bars I mess up the ending. This isn't helped because even though it's only the three of us it still uses adrenaline and I can't replace it as quickly as I'm using it so tire a lot quicker than the other two! On the whole they are incredibly patient with me (more so than I am!!) but I know that it must be really frustrating on occasions and I'm grateful that they put up with me and the obstacles that get in the way. They are 2 special people.
For the last 5 weeks we've had a litter of eight pups in our house. Their mum was rescued by Many Tears and they all came here. When the babes were 4 weeks old their mum went on strike and decided under no circumstances what so ever was she going to feed them anymore. She'd done her bit and I can't blame her. She didn't have much milk and had been struggling. We weaned the pups (probably quicker than normal but it had to be done) and they are all thriving but the sad thing is, 2 have pretty limited vision. They are now 7 1/2 weeks old and looking for forever homes to go to when they are old enough (in a week or so) but to see the 2 with visual problems find their way around our living room as they remember where every bit of furniture is and where the toy box is, is rather emotional. These pups will never know any different but what will life be like for them? I can only hope and pray that the family that applies for them and get the go ahead will look after them and treasure all the special little moments throughout the dogs life like you would a child. If I could keep them I would. If I kept them it would mean not fostering dogs anymore. Can I justify not helping anymore dogs to help one dog whose perfect home could be out there somewhere? It's an argument I have with myself all the time. The problems incurred with a large litter (8 isn't that big for a large breed but big enough!) are often avoidable if breeding is responsible. Sadly with strays and pets who escape etc this isn't the case. We have no idea who the dad was or what conditions they were born in, the mum was incredibly thin and malnurished. The important thing now is these pups are happy. They have warmth and full tummy's, lots of toys and regular cuddles, they will have happy lives full of love.
We did a gig last night. It was a cracker. Great audience, lovely atmosphere and wonderful food. We didn't play too badly either!! So everything in my life appears to be coming together yet I can't get my head into the 'feel good' bit. Once upon a time in the days before depression set in (there were days!!) I could seperate the bad bits from the good and focus on the positive.
Today was a really hard day. I think part of the diffficulty I have is accepting that it's hard because I did a gig last night and I'm paying for it now. So many people read my Facebook page or see me out and think that it's better, not realising that yes I attended a session or did a gig but that was the only thing I did for 3 days apart from sleep and take pills. Having spent most of today fighing off having to be admitted to hospital with Adrenal Crisis and putting Mum and Alan through hell I at last succumbed and took extra medication. Tablets scare me. I don't have a problem swallowing them, I do have a problem with the long term effects that they have on people physically. The short term ones have been hard enough to get my head round. I've never been the prettiest girl in the class and to go from the weight I was to it increasing by 3 stone in as many months is really difficult to deal with. People say you can be fat and happy..... I'd like to hear from you please and tell me how!!?? I will accept that I would rather be the size I am at the moment and be able to move than be a size ten and be on a zimmer frame, how ever there should be a happy medium somewhere.
Having spent most of last week sorting out my bedroom so that I could relocate upstairs allowing us room to foster MORE pups and dogs (helping my dream of running a dog rescue come true) I realised that I can't manage the stairs like I thought. Within three trips up and down I was needing to lay down with my feet higher than my head and swallow Hydrocortisone tablets like they were smarties. No it's not because I was unfit, it was just the physical action of packing each box and carrying it up the stairs. Something which I would have taken for granted only not so long ago. Now I have the problem of sleeping downstairs but having my clothes upstairs! Luckily I have a very understanding mother who is in the process of helping me try to decide..... do I continue to move things upstairs to help more dogs but do it slower or, or I bring everything back down? In the meantime she helps me by getting my clothes (already moved up) and bringing them down. I couldn't function without her or Alan, something which many people may think I take for granted but not one single day goes by when that is something that I do realise. How lucky I am to have them. As things get darker in my mind I try to focus on the good bits, I can hear a flock of seagull type noises from the living room, it's the pups tea time. Their body clock is more reliable than big ben. I know then that it will be puppy cuddle time and there is nothing more therapeutic (apart from playing music) than having an innocent, disabled (yet not because they know no different) pup fall asleep on your lap making little snuffle noises. If there is anyone out there able to offer a rescue dog a home, please do. It's hard work, it's frustrating, it's heart breaking but the rewards out weight it all. Go on, give a rescue dog a home.
My LATEST panic is at the age of 28, I used to be full of energy, although never terribly accademic very career driven, I knew where I wanted to be but, where am I and where am I heading? I have a younger sister who always appeared so laid back not caring where life was taking her who now owns her own house and is climbing the career ladder. I'm treading water to get from morning to night and mulling over where the heck things went wrong. I think I've just hit the nail on the head, perhaps if I looked to the future and if I do find myself looking bac focus on what I HAVE achieved things would look start to seem more positive and tomorrow is a new day. I blame the time year..... Tis the season to be jolly my a**e :-D
p.s This is being 'published' as a stream of consiousness...... all errors gramatical and typo's will be corrected shortly
Tuesday 20 November 2012
the beginning............
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.
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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