Date: 13.06.2011
From: Doug
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Subject: A long road to treatment
Up until early December I was very fit and active working within the construction industry, then late December for some reason my fingers and hands started swelling up giving me excruciating pain and taking the ability away of being able to grip anything for a long time and even causing the problem of turning keys to either open a door or turn the ignition on in a car. The construction industry closes for 2 weeks over the Xmas period so I decided to travel 200 miles from Essex to Yorkshire and see my family over the Xmas period and to pop to see my doctor who I rarely saw to check out why my hands and fingers were so swollen, he gave me a prescription for some tablets to last me a month to take the swelling down and arranged for me to have a blood test a couple of days later on the 31st of Dec and said to phone them up when the blood test would be due and if it came back clear he would arrange for it to be investigated further, I told him I would be back at Essex in that time and wouldn't be going back to Yorkshire for a good while so he advised me to register with a doctors Practice in Essex when I got back and they could get my blood tests results from Yorkshire and have my medical records sent to them so they could find out why my hands and fingers were so swollen up. I got back in to Essex just after the new year and couldn't wait to get back into work or so I thought then when I got a phone call to start work approx 40 miles away I thought great then when I started even though I was only doing light duty work for a while my hands were literally killing me and got worse the more I used them to a point where I couldn't even put my boots on or open a packet of crisps without using my teeth my fingers were so sore and weak I just struggled at gripping anything with them, I just about managed to do a four days work and struggled to drive the 40 miles journey home as my wrists were now starting to hurt too. The next day was a Friday I didnāt have it in me to go to work and decided to go to the medical walk in centre to get my hands checked out. I was passed onto a nurse who diagnosed me with tendonitus and after explaining all the tendons symptoms and the human body with me she gave me some hand strap supports to help me use my fingers and hands properly as well as a load of literature and said it could take weeks or months to get back to normal I put my hand straps on walked out of there and could drive again and lift items up with my fingers again I felt great, the next few weeks I seemed to just about manage to drive back and fourth to work and only do 2-3 days work a week then I would have to rest in bed for the next day or two my hands were getting worse and my legs were buckling slightly under me I was even struggling at this point to pull up my zip do up buttons and pop tablets out of there packets I was starting to walk slower with my legs slightly bent as my knees were tightening up and I was struggling at getting up off a bed and chairs having to use my elbows or fists to push myself up, I couldn't even take the top off milk cartons or open packets I had to rely on my girlfriend or my friends where I lived to nearly open everything up for me it was getting extremely frustrating and embarrassing. By early Feb I had run out of the months supply of prescription drugs I had been taking, the swelling had increased to my wrists and knees to the point I had trouble sitting on chairs or lifting myself up out of them, and when I went to bed I couldn't lay on either side as my legs were killing me and I suffered from excruciating terrible leg cramps so I fidgeted all night long, not getting much sleep, I could only lay on my back and I struggled to lift the bedding off me in the morning it felt as if there were loads of laundry thrown on top of me pinning me down to the bed, then I had trouble getting out of bed and into a standing position so I made arrangements at the local doctors practice to register them as my new doctors, I made an appointment with the doctor telling him about my situation and what the doctor up north said to me, he gave me a prescription for some different tablets for the swollen joints and sent me on my way, as the month went on I got worse and worse I could no longer work at this point or drive come to that, I was having so much trouble bending my legs they felt so tight with the swelling that I had on my knees, my arms were now losing their strength and I was having trouble lifting my self up by my elbows now and was losing my balance as I tried to walk, I could not even sit up in bed with out the pain hitting me hard and all my joints were now so weak and useless. By mid Feb the situation got even worse I could not even get myself dressed properly, I had no grip in my hands or fingers at all, I could not reach down to put on my socks or boxers on, at one stage my good friend the landlady had to put on my socks, and I had to knock on her door when I went out for her to let me in the house as I could no longer even turn the key in the door to let my self in. My walking movements were very small and slowly I was starting to walk like a penguin, I had to rely on others for the first time in my life to fetch and carry for me, and take me where ever I needed to go, and for them to help me on and off furniture, as well as helping me in and out of cars, my girlfriend was now becoming more of a carer looking after my needs, lifting me in and out of the bath which was not at all easy it took a strain on both of us, she was even having to cut my dinner up for me as I had lost the ability to cut up my own food even, as well as dressing me and helping me in and out of bed she was having to hold me up as I walked as I was so of balance and unstable. I was by this stage getting very down in the dumps and decided I had enough of the constant strain on my body and the pain I was constantly in that I decided to go to the hospital as I knew there was something seriously wrong somewhere and I now wanted it sorted out, my girlfriend drove me up there around 10 pm at night got me out of the car and helped me into the hospital and we sat there waiting for our turn for about 5 hrs by this time I was shaking vigorously and could hardly stand, I had to have a blood test and had my blood pressure checked we got called in to see the doctor and I told him about the past couple of months and of how everything had got worse he just said you didnāt need to tell me anything your blood shows inflammation on your joints so you need to go back to your doctors tell him to stop using you as a guinea pig by giving you tablets that he donāt know that will work for you and refer you to see a rhumatologist then he sent me packing by this time I was nearly to the stage of crawling back out of the hospital my body was totally drained. Come the next day I went to my doctors with my girlfriend, I told the doctor what the hospital had said the night before, he had me strip my trousers off looked at my swollen knees and feet as I was standing there crouched and trying to keep my balance looking at my quite muscular legs he then asked my girlfriend what I was like before all this happened she told him I was very fit and active but now I have hardly any mobility at all and after being on my feet for a hour or two I have to go for a lay down as I get totally drained, he then decided to do what I told him the doctor at the hospital had said and made arrangements for me to see a rhumatologist telling me that it would take between 4 - 6 weeks before I would get an appointment, I thought God I aināt going to last that long canāt I just go to the vets and get an injection to put me to sleep for good I cant take anymore its killing me, we made our way back out of the doctors practice I was even more slower and bent over when we came out of there as my body felt it was just about to drop my girlfriend took me back to hers where she put me to bed and I slept for a couple of hours allowing my body to rest and to try and get the swelling of my feet down. The next few weeks got harder and harder I was very stiff around my knees and could hardly bend them, I had trouble getting down onto a toilet and then when it came to getting back off the toilet I was sat there for 10-20 minutes while I worked away of getting back off it, I was struggling even more to walk and was going into shakes sometimes just my legs shaking but sometimes my arms too, I had to sleep by myself as even a slight movement of someone at side of me could cause me pain, but then the moaning I seemed to be doing when moving about in the bed and the jolts I was getting through my body in my legs hands and feet made my body jump and me moan even more would annoy my girlfriend as she would go into a panic or I would startle her, my arms and legs were losing their muscles as I was losing weight at a fast rate at one point 13 lbs in 3 weeks, my arms and legs were looking like they belonged to a 80 year old person where my muscles used to be was just sagging loose skin I was looking awful. On the 9th of march 2011 it got to the point I was getting more distressed with the situation so a few of us came up with a plan they were going to lay me on the floor call an ambulance and say I fell off the chair as I didnāt have the ability to get myself off the floor I would be layed there until the ambulance came, it worked a treat the paramedics came both being woman and they were the first sign of genuine caring people I had came across from the medical industry since I had been in this situation, they heard from both me and my landlady about me being pushed from pillar to post over the past few months and they were disgusted looking at the condition of me and my incapability of being able to lift myself up etc, they got me in the ambulance did some tests on me then got me to the hospital saying that they would be making sure I got a bed and would get looked at properly, and thatās what happened true to there word I got admitted I can never thank them enough, I had numerous tests done although by this time my body had shutdown and they were having trouble getting blood tests out of my veins as they had disappeared and shut there selves down, then early hours approx 2 am, I was given a bed on a ward. The very next morning on the 10th of March 2011 I was checked out by a bone doctor, a muscle doctor, and a rhumatologist, they all had there own opinions but the rhumatologist sounded most likely, then late morning I was moved to another ward where I was having my blood pressure checked, numerous blood tests, and I was given painkillers and anti anti-inflammatory tablets this is my very first full day in the hospital and I was still struggling to move about properly and all my body was aching, I had doctors visit and question me and told them the same story Iād been telling since Dec I think I had either picked up a virus or got a blood clot as my legs pulsated vigorously sometimes as if there was no circulation then all of a sudden it would move but as usual it fell on deaf ears the doctor knows best after all or does he? The very next morning on the 11th of march 2011 I was sat on the chair next to my hospital bed when breakfast came round, I had just had cereals and was drinking a cup of tea while I was having a conversation with the patient in the next bed directly across from me when all of a sudden I noticed my speech start to slur my face seemed to droop on my right side and my left side of my body went limp I just about managed to reach across the bed for the buzzer then I collapsed on the floor, when I came round the nurses were around me trying to get me back up on the bed I was paralysed down my left side of my body and the right hand side of my face I realised by then that I had a stroke my girlfriend phoned me around 11 am to see how I was I couldn't bring myself to tell her what happened I felt ashamed my speech was very bad so she knew something was up but was told by a friend that they had probably shoved something down my throat, by the rest of the day I had 2 more episodes where I had strokes I canāt remember everything just bits and pieces by around 6 pm time I had doctors around my bed asking questions and checking out my slurred speech and my facial and body movements when through a gap I saw my girlfriend appear and saw the shock on her face I couldn't bare to look I held my head down in disgust of myself as she held my hand tightly and said softly itās ok luv it will be ok, the doctors were all discussing what should be done, then I saw the landlady's head appear as soon as she saw me she turned away and took a walk while she composed herself before she returned again I put my head down, by this time I had 2 very good friends and my girlfriend there they were the most 3 important people in my life at this time, I was getting confused by this time with the doctors giving me different advice and I was not in a frame of mind to take it all in, a nurse turned up from the cardiology department explained things more clearly and told us the options regarding treatment and weather my paralysis would be permanent or temporary, she took me off in a wheelchair where I had a MRI scan then took me back to the ward apparently my face was returning to normal and the droop was slowly disappearing so she said I should just go on the Anadin which would thin my blood out and remove any more clots that I may have and that I was not to take the drug the doctor wanted me to take as the risk with it was high and it could make me paralysed or even worse cause bleeding on the brain and kill me. My girlfriend disappeared for a while with the landlady, then the doctor kept badgering me to have the drug and I just gave in. I did not know if I was coming or going but the landlady's girlfriend who was sat with me went and told my girlfriend what the doctor was trying to get me to do, she came flying back in and told the doctor that she could live with my face if it didnāt go back to normal, but she was not risking having me paralysed or dead just because the doctor wanted to try and make a name for his self the doctor disappeared, and I felt so secure now that my girlfriend had took control I was so proud of her and so reassured that she took the responsibility away from me as I was still not clear in my head. The very next morning on the 12th 2011 my face had gone back to normal my body was no longer paralysed and I felt good then around dinner time I had a steroid injection in my backside as well as my other medication and within a couple of hours I could bend my legs push myself up with my hands and open bottles again I could not believe it, then when my girlfriend came to visit along with our 2 friends they were as lit up as me I even showed them I could do a karate kick got them laughing it hurt me a little but I did not tell them, I kept that to my self and just grinned and beared it, the day was getting better next thing I needed to get out of there I had missed so much over the past few months I still couldn't walk great but it was better than it had been and I could get up and down easier, come the afternoon we got took down to the cardiologist ward where I was taken for more tests I was informed I had suffered from a few mini strokes known as a TIA, after my scan we were took into to see the cardiologist doctor who told me what medication I would be on and that I would have to have numerous more tests over the next month or so I still could not believe I had a stroke I was told I couldn't work still or drive for at least another 4 weeks and that I would have to take my prescribed medication regularly. The next day on the 13th of March 2011 I had to have a blood test and go to have my hands and feet x rayed then once the doctor gave me the ok I could be discharged I just couldnāt wait, I got released around 2pm along with my list of medication I had to take, I was managing to walk better but was now wondering how to tell my family and kids up north in Yorkshire I didnāt want them worrying and it was not appropriate to do it over a phone call, I was not in a situation to drive up there to tell them face to face at the moment, so I thought it best left until the time came when it was possible, although I was was eager to tell them as I thought they had the right, one of the main drugs in my prescription was aspirin, I had to take a 300mg dose for the first 2 weeks along with other drugs, then after 2 weeks I had to reduce down to 75mg, the first 2 weeks were not too bad but half way through the third week I got bed ridden I couldn't get out of bed without help and that was just so I could go to the toilet I was stuck in bed for 3 days I seemed to have gone backwards my legs had stopped working again and my hands were losing there ability to help pull up or push again, I could not even lift up my arms properly to my face so I could wash my face, after the 3rd day of me being bed ridden my girlfriend got the doctor out to me, he told us I was a very lucky man because of the stroke and said that because my aspirin were now reduced to 75mg they were just acting at thinning my blood and not acting as a pain killer or anti inflammatory like they did when I was on a higher dose so he prescribed me oromorph, the very next day I could move again I was not perfect but I could walk steadily and was in less pain. On the 7th April I had to go back to the hospital for a scan of my heart, then on the 13th of April, I had to go back to the hospital for a bubble echo of the heart, and a 24hr tape which is a mobile ECG that I wear for 24 hours to check out my heart when Iām mobile, that was taken back the next day and removed. On Fri the 15th of April my girlfriend surprised me by borrowing the landlady's car and arranging with some of my family to drive me 200 miles up north a long drive that she had never undertaken before, as well as her hating motorways I was ever so proud of her she had been my angel and my hope all the way through my experience, she had done so much and taken so much on I could never thank her enough as not only did she do all that, she had to to see me in my state and live through it with me it must of been so hard for her, we left Essex for Barnsley around 3pm and got there around 6 pm after a couple of small stops to give us a little break, my first stop was to tell my 3 sons about my stroke and condition, then off to my mothers where we would be staying, I told my parents who in turn then contacted my brothers and sisters it was a burden I had got off my chest now I felt so relieved. The journey did not do me much good by the time I settled down on the evening my feet had ballooned up much more than they had ever done and stayed like that all the time, I couldnāt even get shoes or slippers on my feet on the Saturday we borrowed a wheelchair so my girlfriend could take me out briefly for a walk then on the Sunday we headed back to Essex I was still struggling walking my feet still swollen and my girlfriend having to open the car door for me and help me in and out. On the 28th April we had to go back to hospital to see the cardiologist doctor once again hobbling along like a penguin being held up by my girlfriend, we were told that the hospital had lost some of my blood tests so I had to take some more that day while I was there, that all the tests I had done over my heart and arteries were all very good and clear, then she told me I was a very lucky man and I had a proper stroke and not a TIA that we were told originally, that threw us both for a while when asking her why I had the stroke she said she had no idea but I had 3 and my brain had been damaged in 3 places as to what that entails I have no idea, I get forgetful, drift off into a trance sometimes, and my mind is always ticking over, and Iāve lost my way a few times, but I donāt know if thatās because my stroke or whether its my medication Iām on. The next few weeks were basically similar my feet constantly swelled, I could go walking around the town with my girlfriend making her walk so slow at my pace but I was out and about. I had trouble bending my knees so sitting down and getting back up was a very hard painful chore, sometimes my girlfriend having to try to lift me up bless her she is only little and fragile, sheās been such a godsend I donāt know what I would of done without her as well as our other 2 friends that is I would of probably just decomposed in my bed. On the 28th April 2011 it was another return to the hospital this time to see the rhumatologist this has come 4 months after my illness first started, the rhumatologist was so understanding, and very explanatory she checked me out asked me questions, and seemed very sincere when she was told by both me and my girlfriend how everything started and what we had both had to deal with, she listed all the medications she was going to put me on and explain why there was so many and what each one was for although she did point out things can change and that could be later on down the line so who knows, anyway she gave us something positive as well as the prescription and now I could pick up the steroids and other drugs and see how things go, we read the literature and about every drug I was having to take, some things said they could take 16 weeks to work some, said 3 weeks or more to work, well enough reading of literature I want to try my drugs, the next day I was on my feet a bit unsteady but I was on them stronger than before, the day after was even better I am walking better now than I have been in all these months my hands are being used again although they are still weak at the moment, my left shoulder still kills me and has no strength but everything else is so much better, I can go for a walk although the further I walk the slower I get and my feet do swell but not as bad but Iām feeling good again, I do suffer small side effects but I can cope with them, and I do have more appointments to do but time will tell the outcome of these, so for now Iām content to just seeing how things go. One last thing I would like to point out is that I have worked hard my whole life. Iām self employed and not been able to work since this happened, running out of resources I tried to claim benefit, something I havenāt done since the 80s, but yes you guessed it I got no joy, they take there time lose the paperwork then ignore you totally, talk about kicking a man when he is down. I'm dedicating this to my girlfriend Yvonne, and our 2 very good special friends Shirley & Joe I love you all loads and owe you big time
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