I had a few nice comments after my last blog, glad to hear it got people talking. From some of the feed back a few points come through very strongly.
Talking about your illness: People with long term chronic illness do need to talk frankly about how they are feeling and what they are going through, however rarely do. Main reasons seem to be, feeling guilty in case what you have to say might upset the other person, and so not much point as you wouldn't be able to be completely truthful, also because others often seem to find this kind of talk awkward and they are not comfortable to listen to it, or being afraid people will think you are being negative - cannot smile 100% of the time!! Think how often you have asked someone in this position how they are and you get a casual "fine" or similar response, and you just accept that........
Isolation: Many of us feel a real sense of isolation, if you live on your own, or your friends all work and you have had to give up work, you can often go days with out speaking to another person - thank goodness for Twitter/Facebook etc. This also includes a loss of independence as you are no longer earning and feel a sense of total dependency on others, the State etc. With all the changes in Benefits it is also becoming harder and harder to obtain any financial assistance, and the procedure that has to be gone through in order to make a claim are quite simply soul destroying.
So mix up lack of sharing of how you are really feeling, becoming isolated, stuck in the home for long periods of time, and having to go through demeaning interviews in order to try and claim any benefits, is it any wander many people are depressed and find it difficult to feel other than they are struggling on merely to exist, not really to live.
I know myself it can feel as though the flippin illness is all there is, as it controls so much. I rarely go far on my own due to fatigue, many friends are still working, and so much of my time is spent with my mother. While I love my mother and enjoy her company, we rarely do more than visit hospitals for one or other of us, or shops. Places I would love to visit are often places she has no interest in. I would love to go on holiday, but the uncertainty about how I might be,and the nuisance factor always make me hesitate over making any arrangements. So everything is a negotiation or a compromise with the illness.
But despite the many negatives, I feel many of us recognise that we have become stronger people because of this, maybe able to empathise more with people with illness. We are also able to laugh, at times a little inappropriately, but a dark humour evolves in time. Also you really do find out who your real friends are, because you are not always an easy person to be friends with! And, for me an unexpected and delightful extra - the friends I have made online, people I have never met yet I would be bereft without. People I can talk to openly, and can listen to with understanding. My thanks to them. We have our own problems yet they allow us to have a measure of understanding with each other, and pop in and out of each others lives.
Well off for another coffee and a few more pills.
Monday, 16 May 2011
Wednesday, 11 May 2011
For further discussion
Points for discussion
Personal problems in relationships - with family
As this disease is not always the same, ie one day not too bad, next day cannot get out of bed, people find this hard to accept and perhaps to believe at times. This is often when the name calling of lazy occurs, which is of course so inacurrate as well as hurtful. It affects so many things, a few examples, planning outings, holidays & travel, distribution of housework (may seem such a silly thing to add, but believe me it can become a monster of a problem with all sorts of resentments-on both sides growing away), people thinking you just want to be the centre of attention.
Personal problems with friendship and social life
Afraid to make arranegments long term,in case you have to cancel last minute, the need to ensure there will be a seat etc takes away the ability often of sponteniety. Some how it ends up that everyone comes to you to visit as its easier, then they always visit you but forget to invite you to theirs when they are having a "do". You can so easily end up feeling such a nuisance to everyone,till you dont care much anyway!. If you have, at some point,had any problems with your jaw, or innards, you may not care to eat in public either.
Problems with work situations- time off - attitudes
The constant struggle to try not to have sick time off work in case it puts your job in jeapardy, especially when people do not understand AS, and cannot appreciate that you can be quite well one day, yet unable to get out of bed the next. This often causes cynicism in their attitude to you. If you do not have a senior/manager who is sympathetic, often you feel you are being monitored more closely than others, perhaps to show you cannot cope with your job, plus often passed over for promotions, again in case you cannot cope.
Coming to terms with disability
At some point we have to accept that we have a disability. Acceptance of your limitations and learning to live with them can be a very difficult thing to do. Women feel they are the home makers and can find it difficult to let go of control in the home especially. Learning to be kind to yourself is very important otherwise you can end up in a continous battle, fighting your condition and becoming depressed when you realise you will never, ever beat it. You must negotiate a way to live with it in terms of medical assistance to ensure you are as pain free as possible, and with your family to communicate when help is needed/to recognise when help is needed.
Dealing with the attitudes of strangers
People can often be either overwhelming in their need to help, or are too embarrassed to to try to help, so ignore your condition. Instead of irritation, it helps to either thank them and show appreciation for their concern,but explain what you can manage. For those who ignore your AS, that may work fine, or you may have to simply explain the situation to them. or ask people to slow down,or whatever and explain what you can manage. But trying to be understanding and not irritated - At some point the acceptance has to come that you have a disability, acceptance of your limitations and learning to live with them, to try and be kind to yourself otherwise you can end up continously fighting your condition and becoming depressed when you realise you will never ever beat it, you need to negotiate a way to live hand in hand can be very difficult.
This is an article I am submitting, so thought I might as well post here also
Personal problems in relationships - with family
As this disease is not always the same, ie one day not too bad, next day cannot get out of bed, people find this hard to accept and perhaps to believe at times. This is often when the name calling of lazy occurs, which is of course so inacurrate as well as hurtful. It affects so many things, a few examples, planning outings, holidays & travel, distribution of housework (may seem such a silly thing to add, but believe me it can become a monster of a problem with all sorts of resentments-on both sides growing away), people thinking you just want to be the centre of attention.
Personal problems with friendship and social life
Afraid to make arranegments long term,in case you have to cancel last minute, the need to ensure there will be a seat etc takes away the ability often of sponteniety. Some how it ends up that everyone comes to you to visit as its easier, then they always visit you but forget to invite you to theirs when they are having a "do". You can so easily end up feeling such a nuisance to everyone,till you dont care much anyway!. If you have, at some point,had any problems with your jaw, or innards, you may not care to eat in public either.
Problems with work situations- time off - attitudes
The constant struggle to try not to have sick time off work in case it puts your job in jeapardy, especially when people do not understand AS, and cannot appreciate that you can be quite well one day, yet unable to get out of bed the next. This often causes cynicism in their attitude to you. If you do not have a senior/manager who is sympathetic, often you feel you are being monitored more closely than others, perhaps to show you cannot cope with your job, plus often passed over for promotions, again in case you cannot cope.
Coming to terms with disability
At some point we have to accept that we have a disability. Acceptance of your limitations and learning to live with them can be a very difficult thing to do. Women feel they are the home makers and can find it difficult to let go of control in the home especially. Learning to be kind to yourself is very important otherwise you can end up in a continous battle, fighting your condition and becoming depressed when you realise you will never, ever beat it. You must negotiate a way to live with it in terms of medical assistance to ensure you are as pain free as possible, and with your family to communicate when help is needed/to recognise when help is needed.
Dealing with the attitudes of strangers
People can often be either overwhelming in their need to help, or are too embarrassed to to try to help, so ignore your condition. Instead of irritation, it helps to either thank them and show appreciation for their concern,but explain what you can manage. For those who ignore your AS, that may work fine, or you may have to simply explain the situation to them. or ask people to slow down,or whatever and explain what you can manage. But trying to be understanding and not irritated - At some point the acceptance has to come that you have a disability, acceptance of your limitations and learning to live with them, to try and be kind to yourself otherwise you can end up continously fighting your condition and becoming depressed when you realise you will never ever beat it, you need to negotiate a way to live hand in hand can be very difficult.
This is an article I am submitting, so thought I might as well post here also
Monday, 25 April 2011
Monday morning again, I see. Been quite confused with it being a week since I was last out of the house days have all kinda merged.. Have been very active in all things AS due to it is awareness month, and of course did my story, with my apples!! it was good to do, very long and with lots left out, buts it was covering such a long time span.Felt I had to keep telling non AS people the reason for it in case they thought I simply wanted to talk about myself...
Although initially depressing, I have gone through a few different emotions since finishing. I think it has brought home to me that I should care less about the house and more about getting my paints out etc etc to try and not get so frustrated by what I can't do and concentrate on what I can, enjoy and treasure the friends I have, both in reality and on line and worry less about the ones who drift away. I found it quite interesting as I have one friend who has been coming to visit me for months now, though she lives nearby,and I read on line about her having a BBQ. You see people think of you differently, if they have the time to come and see you, tell you all about their lives and problems, but rarely think about inviting you to their home, or social events........
Oh well I shall still go out with my make up on, hair as red as I can get it, wearing whatever I feel like, despite listening to a piece about how you should dress for your age - bollocks!! At my age I wear what I bloody well want to, why should I wear a tailored jacket and smart trousers, I prefer wide leg joggers and baggy linen, no fitted jacket,s nice light wool wrap, or long baggy blouse as jacket, that's me!! and discrete jewellery - no way hose - the bigger the better whether necklace, earrings or bracelet. Those of you who know me, know I love my bags, all colours and sizes too, and scarves, so many scarves........ I try to smile at people - when I can get my head up far enough to see them!!
Putting my feet up this afternoon and watching a couple of films, after current health issues, I was silly enough to do some ironing, so now both wrist supports are being worn, never mind they are colour co-ordinated!!!!
Although initially depressing, I have gone through a few different emotions since finishing. I think it has brought home to me that I should care less about the house and more about getting my paints out etc etc to try and not get so frustrated by what I can't do and concentrate on what I can, enjoy and treasure the friends I have, both in reality and on line and worry less about the ones who drift away. I found it quite interesting as I have one friend who has been coming to visit me for months now, though she lives nearby,and I read on line about her having a BBQ. You see people think of you differently, if they have the time to come and see you, tell you all about their lives and problems, but rarely think about inviting you to their home, or social events........
Oh well I shall still go out with my make up on, hair as red as I can get it, wearing whatever I feel like, despite listening to a piece about how you should dress for your age - bollocks!! At my age I wear what I bloody well want to, why should I wear a tailored jacket and smart trousers, I prefer wide leg joggers and baggy linen, no fitted jacket,s nice light wool wrap, or long baggy blouse as jacket, that's me!! and discrete jewellery - no way hose - the bigger the better whether necklace, earrings or bracelet. Those of you who know me, know I love my bags, all colours and sizes too, and scarves, so many scarves........ I try to smile at people - when I can get my head up far enough to see them!!
Putting my feet up this afternoon and watching a couple of films, after current health issues, I was silly enough to do some ironing, so now both wrist supports are being worn, never mind they are colour co-ordinated!!!!
My Story with AS
My Story
by Jackie Aitchison on Wednesday, 20 April 2011 at 19:57
In the begining....while a teenager had lots of aches and pains so back and forth to doc, "growing pains" was the diagnosis.Continued having constant pain in spine (mainly) doc after doc could find nothing wrong, until they basically said it was all in my head. Eventually diagnosed with Ankylosing Spodylitis as my GP belived there was a problem so kept sending me to different hospitals, different specialists. By this time,however, there was severe damage and fusion in spine which was why it was spotted on the x-ray.I was told they had not been looking for AS as it a mans problem!!! This was early 70's.
By this time I was married and in my early 20's. One of the things I was told at this time was that my spine was not strong enough to carry children. For next few years continued taking painkillers, had several stays in hospitals with major flare ups. At that time we had a Rheumatology hospital, the consultant there reviewed my drugs and expressed his concern and disgust that a)I had never been referred to them before, and b) that I had never been on anti inflammatory meds.These were prescribed and the pain was managed much better, but I had spent time in hospital, which probably could have been avoided.
Next major event was one New Years eve, I decided I was not going to drink as we were simply going round the neighbours in the wee village we lived in at this time, I slipped on the ice, was carried home by 2 drunk men but one was a fireman so knew how to carry me safely, next morning my GP, who had heard all about it, called and immediately insisted I got to hospital, it turned out I had smashed a vertebrae. It was contained so no danger, so I insisted on going home, I could have bed rest easily at home rather than in hospital, though I must admit it was very painfull.I was advised by my doc if I had been drunk I would probably have been far more relaxed and would not have done as much damage............
The next milestone was one day I had a strange eye, went to see GP, nothing to be seen, but 2 nights later he appeared at the house in his car and dragged me off to the eye hospital where I ended up staying for 1 week.He had been reading up about AS and spotted the connection, I had developed iritis (uveitus), and as it had not been treated caused a few problems, in fact had to be injected into the eyeball as the drops did not work. From then on I had iritis on average 3-4 times at least every year,in one eye or the other, and a few occassions in both at the same time, just had go straight to the eye hospital as speed is so important. Only had injections twice more and 2 other stays in hospital. Got to be very good at recognising the signs so I have had a few arguments with nursing staff who would insist there was no iritis, but when I insisted on seeing the doc, it would be confirmed! In over 30 years now have only been wrong once! They should by now read the bloody notes and listen to me. I am reactive to the steroid drops, unfortunately, and it causes the pressure to build up in the eye - this can turn into glaucoma. On one occassion I actually lost sight completely in one eye for a few hours, rushed to eye hospital where the doc were running around before giving me pills to take plus injection, pressure in eye had soared. My eyes are now very sensitive to light and I have lost some vision at the periphery of 1 eye, and will most likely need surgery at some point. Go to the eye hospital every few months for check ups, but can go anytime I have a concern.
A few years later when someone pulled out a chair as I was about to sit on it, I fell heavily and the next day was in great pain. I called out the doc who insisted it was a flare up of AS,or a bad bruise... I told him it wasn't as I knew my body. I was told later that was because I was not screaming and crying when I saw my GP, however when I went to see my consultant at the Rheumatology Hospital he took one look at my face as I walked in and sent me immediately to x-ray - break no 2. To stay on the same subject the 3rd time was 5 years ago, hoovering and bent down to pick up a bit fluff and heard a crack - same old same old - pulled muscle, torn ligament etc so sent me to a physio - interesting journey crouched in the back of a taxi-you have no idea the number of potholes in Edinburgh!! Anyway the physio sent me home as they refused to touch me as I was in so much pain, and made arrangement for an x-ray. They also insisted that they would come to me till they were satisfied with my situation so I wouldn't have to travel. They also instigated further investigations which eventually confirmed I have osteoporosis. This combined with the AS means I have to be very careful of falling over etc.
In December 1999 they decided to operate on my back as I was becoming very badly bent over-this meant opening me up shoulder to bum, breaking the spine in a couple of places, placing metal rods at each side of the spine and hooks to pull everything into alignment. The op was on the Tues and they put me in plaster on the Friday - should have been longer before the plaster but it was coming up to Christmas and the holidays. That was the worst thing ever. If you can imagine, I had to sit up being held by several people, I was in huge pain and dizzy, while they placed the big padded stuff round me from under arms but going up to throat, and down to my hips. The doc ran round with injections of morphine giving me an injection whenever I wanted one. The there was the scaffolding. I was carried over and laid on this structure, with pipes running under my knees and under arms, to leave the section to be plastered clear but all the rest supported and being pulled straight-there were material bonds round my neck pulling my head into place and the same on feet so back was being pulled straight. When they finished the plastering,I carried back and sat up as they had to make sure the plaster wouldn't be too high to choke me, or too low to hurt me when sitting. Then laid down on a trolley and sent to x-ray to make sure everything was in the right place. I was put on a morphine drip. I was in hospital for a month.
Had to learn to walk, to get washed without wetting the plaster etc etc. After a few weeks had to go back to hospital as there was a black discharge, turned out because the plaster went on too early there was an infection, the took the plaster off, but I had to remain plaster less for a week and had to say on the bed and in the wee room I was in as I couldn’t be moved. No further problems, but I had 2 further changes of plaster, each one a little lighter than the last, over 10 months. Then I was fitted with leather and metal strap on body brace, which was bliss as I could take it off at night and to bathe. That was used for another year.
In the meantime a hiatus hernia and underactive thyroid were discovered. I now know this is very common, but no one has ever told me before I read in in Jessica's literature. The thyroid and AS both have as a side effect, fatigue, that explained my continual exhaustion as I described it like walking through water all the time. They also discovered that I had a lot of irritation in my stomach and colon due to the years taking anti inflammatory drugs, and I was anaemic. Again, even more fatigue. So could only take painkillers, which really don’t do it for the pain.
However a few years ago I read about a very new injection which had been used for similar conditions, Enbrel, so spoke to my rheumy consultant and I qualified to be given it so started with initially twice weekly self injection, the dosage was doubled so it could be once a week. However the anaemia was becoming a problem and I have been rushed in several time for emergency blood transfusions - the average count is 120-150 for a woman, once I was 50. My GP gets excited of my count is in 3 figures!!
Despite several endoscopies, and colonoscopies, got the camera pill to swallow. In the end there was no obvious reason for the ongoing severe anaemia, just probably to with AS....., if in doubt...
So between the painkillers, the injections, thyroid pills, hernia pills, iron pills, calcium pills, osteo pills, eye drops, I get a shopping bag full with each prescription, luckily as I have thyroid medication I don’t pay for any prescriptions!.
There has been the almost inevitable depression at times, mixed with loss of confidence caused by the way I look (now very bent over again) and the feeling of being such a nuisance – cant walk far or for long, don’t want to go out much as if in a pub e.g. need to have a seat etc, so no longer have a social life. What I do have is people visiting me – which also is difficult as I worry that I can't manage to have my home in as good a condition as I would like. But friends will realise that.
The AS was also a contributing factor to the breakdown of my marriage as it is a very difficult condition to live with for the partner, especially when young and active. It also meant my working life was very difficult due to the constant struggle, and when the association I worked for merged with another one, they moved office which meant an hours travel each way with 3 change of buses. After 3 years I simply knew I couldn't go on any longer and one day just got up and went home. My HR manager and my GP were very good and guided me through it all so I was signed off sick for a year which meant I could claim early retirement on health grounds. I remember going to see my GP with trepidation, explaining the situation to him, and all he said qyuietly when I was finished, was, I cant believe it has taken you so long to get to this point, he told me he admired my determination to work, didn't have any idea how I had managed to go on for so long. Well that was it, several boxes of tissues later we got organised. Again I think this was because we are so used to people not really getting it (AS) and having to defend ourselves from being considered lazy or taking advantage of having AS (especially when I wasn't so bent as I am now). I dont get the Old age pension as I am too young, and I could not have been able to do it with out the support of my partner an my mother.
I had major surgery last year as I was finding it more and more difficult to breathe, I was taken off Enbrel while they investigated my chest/lungs etc, but what they found was my entire stomach and part of my colon had moved through the hernia into my chest cavity and were squashing my lungs, because of the bent back once they had started to move up they got sucked right up there. They intended to do keyhole, but had to open me up hip to hip in order to pull everything back into place, then stitch my stomach to the abdomen wall so it cant do that again! Unfortunately caught MRRA infection, my veins started to object to the number of IV's and so on, also throat infection as they haad so much of a problem getting tubes into throat due to lack of movement in neck and inability to open mouth wide. I was also told they did not find the hernia to close, as they couldn't get me flat enough, so after all that still have a hiatus hernia!.
I have now put on too much weight due the long time with little exercise, initially the breathing problems, then surgery, then winter. I am hoping to get out and about which together with a healthy diet should help me shed some of the excess weight.
Another problem which has manifested itself this last year or so has been a twitch at my left eye, which became stronger and moved down my face so my mouth is now a little twisted. I was given botox, several times but did nothing to really help. My doc suggested an MRI scan to see what was going on, it was all arranged that I go in to have the scan of my head, however as the table part is very hard and flat and the part for the head is actually lower, there was no way at all I could do it, we tried every thing we could but all we succeeded in doing was causing me a lot of pain! So their thinking caps are on again. So there are problems in so many ways, anaestetic, various tests, dentist etc etc I will not be surprised if AS is blamed for this too!
I got back on Enbrel in January, however I have been dissapointed with the results, certainly not as effective as it used to be. I have also noticed my hands are very bad now, some morning completley numb,(we are thinking carpel tunnel my knees are painfull when I gave been walking, feet and ankles painfull, and sciatic pain too. My neck is very bad as I am so bent when I am out walking I have to strain to try and look up all the time.
My eyes have been much better in respect of iritis since giving up work, I put that down to less stress and probably not working at a computer all day. Also we decided to use 2 different very mild steroid drops in both eyes continually as a maintenance programme.
These are the "highlights" of the last 40 years of my life to give you an idea of some of the trials. To many to go over them all after all it has been over many years....These days the depression is more disabling, partly because just so damn tired of it all and partly because in honesty I dont have much of a life. As I said earlier, no social life in the evenings, too much involved re planning how to get here, how to get home, will I be guarantted a seat when there also not fair to make arrangements in case I have to call off at the last minute...... During the day time, my friends all work, my partner now works nights so is sleeping during the day so I have to be very quiet and any visitors too...
I go out as often as weather allows usually with my mum, as I am not too confident on my own any more. I think the affect of years of living with a chronic disease, is often thought of in terms of the affect on the body but equally important is the affect on the mind, the affect on your family, the affect on your friends on your life. Your life becomes AS, it controls every aspect of it, people treat you differently, It affects every descision you make, it has to.
I would like to add here though, that having joined various groups, and starting my own for fellow AS' Peeps has been the best thing ever. So many fabulous people out there who are a pleasure to know. From all over the world,all generous in spirit, who listen to the moaning and support, who exchange ideas and treatments and hopes and dreams, My life is much richer for these new friends even though I shall probably never meet them. But the big thing, the HUGE thing, is they all know,understand and accept everything you have to say cause they KNOW. My only regret is that I wish this had been around in the olden days when I started on this journey, it would not have been so lonely and islolated.
Monday, 4 April 2011
Spring....Where are you??
Not done this for a while so thought I should catch up a bit. Still waiting impatiently for Spring, some brightness and lightness and a little more warmth would be appreciated. This is both for health and for a little uplifting of the spirit! This dull cold weather seems to have been going around for such a long time now, really finding it difficult to find my mojo - still in hibernation I think....... I am much luckier than some of my AS friends, as I can get around, and usually can get out weather permitting. Still have quite a few grumbles, in particular my knees and my hands are new and unwelcome additions. I started a new group recently, we called ourselves AS Peeps. It is an open group so any one can pop in and read our chats. There are some fabulous groups for AS's around,but I wanted one that was more informal, where we could chat and get to know each other better and be a more personal support. A place where on a bad day we can come and find someone to listen, not only listen but really understand how we are feeling. I have met some tremendous people there, and we chat most days. For me the only down side is that so many of these great Peeps are over the pond so the time difference gets in the way, I miss out on being involved in some great chats, abut catch up every morning. Been going through the mill with a very close friend - her mother in law (MIL) had after years (40+) started to be nice to her, however she hadn't been keeping well, anyway to cut along story and all that, she ended up in hospital and seems to have gone down hill very very quickly, to the extent that she is now very vague and disoriented and there are concerns re her going back to her flat. Although it is part of a scheme and there is a manager, she may need more intense monitoring. However, my friend, having to deal with the hospital and all the various services involved, is slowly climbing the wall. It is a disgrace the attitudes, the care she is receiving in hospital by some of the staff, and such a worry. So after years of no contact with her MIL she now finds herself her cook, laundry service,bakery and generally the person she relies on most. Dreadful quandry trying to be involved,make sure she is ok, but retaining her own life, as she is not on the best of health, nor is her husband. It is frightening to hear how people can end up when dependant on others and hospitals and agencies. I must say it has given me nightmares... Enough for now, must go on another search for my mojo, however I did get a lovely card from my Twitter friend Tabitca this morning- beautiful handmade card with an uplifting message - thank goodness for friends xxx
Thursday, 17 February 2011
Back Again
As my dear friend Tabitca has started Blogging again, I feel inspired to do a catch up as I have not done one for so long.
Not a lot to tell actually, still in recovery from surgery in Summer, last hospital visit said to expect at least a year for full recovery - lovely! Still distended stomach so still feel like I look 6 months pregnant, even holding the bump at times, the way pregnant women do as it is still tender and sore!!
Having missed most of the Summer, it feels so long since I have seen any sun and felt any warmth, apart from GCH! So looking forward to milder and dry weather so I can get out and about, get the old body moving again, maybe the 6 months will reduce to 4.......
As it is an important birthday this year, my present to myself is to be the tattoo. I have always wanted one but I have made no absolute decision yet as to the form it will take. There is a tattoo artist on LA Ink, who had a purple rose like flower on her shoulder cap area, which I love, also I like butterflies. Another friend on Twitter showed me a photo of her butterflies on the back of her neck. It made me think that could be rather nice, as I walk so bent and looking at the ground, people see more of the back of my neck than usual, so could be nice. There is a good studio fairly near me, so must pop in one day, might even get more studs in ears, hell if I cant get what I want and like for my next birthday when the hell can I. I dont really care what anyone else thinks, I mean already - with 1 exception- I wear more make up than of my friends, and I definately wear more jewellery and bigger jewellery than anyone else I know, so what is a tattoo, or stud??
I must try to to this more often, helps clear the head.
Till the next time!
Not a lot to tell actually, still in recovery from surgery in Summer, last hospital visit said to expect at least a year for full recovery - lovely! Still distended stomach so still feel like I look 6 months pregnant, even holding the bump at times, the way pregnant women do as it is still tender and sore!!
Having missed most of the Summer, it feels so long since I have seen any sun and felt any warmth, apart from GCH! So looking forward to milder and dry weather so I can get out and about, get the old body moving again, maybe the 6 months will reduce to 4.......
As it is an important birthday this year, my present to myself is to be the tattoo. I have always wanted one but I have made no absolute decision yet as to the form it will take. There is a tattoo artist on LA Ink, who had a purple rose like flower on her shoulder cap area, which I love, also I like butterflies. Another friend on Twitter showed me a photo of her butterflies on the back of her neck. It made me think that could be rather nice, as I walk so bent and looking at the ground, people see more of the back of my neck than usual, so could be nice. There is a good studio fairly near me, so must pop in one day, might even get more studs in ears, hell if I cant get what I want and like for my next birthday when the hell can I. I dont really care what anyone else thinks, I mean already - with 1 exception- I wear more make up than of my friends, and I definately wear more jewellery and bigger jewellery than anyone else I know, so what is a tattoo, or stud??
I must try to to this more often, helps clear the head.
Till the next time!
Friday, 3 September 2010
My Lost Summer
Not been here for a while, and for those who read my rambles in FB or Twitter, you will be aware of the summer that I missed....
For some considerable time I had been investigated by all sorts of docs due to my difficulty in breathing that was getting worse and worse. Eventually they discovered that my hiatus hernia had become a HUGE hiatus hernia, in fact they even changed its name to an intrathoratic stomach!! In other words instead of a little stomach sneaking through an opening into the chest area and causing acid reflux, my entire stomach and even part of my upper colon were all in my chest cavity, which combined with my bent spine meant that my poor lungs and heart were being squashed, hence the problems breathing.
They eventually agreed to operate, despite the dangers because of my other problems and of course the bent spine which also causes my neck to have very limited movement - not good news to the anaesthetist!! They hoped to manage keyhole surgery which would be 1/2 nights in hospital, or of they had to make a bigger incision 5/6 nights.
I was in surgery for 4 1/2 hours and straight to the High Dependency Unit where I stayed for 4 nights. The tubes down my nose had to stay in all this time, and I had to have oxygen all the time also, plus had the morphine on demand. They didn't manage they keyhole surgery - in fact cut accross my waist from one side to the other.
The stay in the HDU was a nightmare, I have no idea what were dreams and what might have happened, I seemed to think I was in different places each night, 1 night I was convinced it wasn't really a hospital at all and discussed my fears with some of the nurses, or did I??? Anyway they then sent me to the ward, however they then discovered I had a blood infection and sent bloods off to the labs. The results came back I had MSSA (same as Lesley Ash had) so I was whipped away to solitary. The antibiotics had to be administered by way of an IV, and there was a minimum time before I could get pills instead. they also discovered an infection in my throat, and I had a bad reaction to the staples, all 34 of them, they started jumping out my skin!!..... So in there for over 2 weeks. My veins also decided to misbehave, and when I came out both arms were covered in bruises. The same needle could only be used for a limited time, then they had to put in another one. My veins became such a problem I had one in my foot- it was also part of the reason I actually was allowed out of hospital with the antibiotics in pill form a little early than the lab wanted but the situation with my veins was so bad.
Now discover that the recovery period is 3 - 6 months, and now 6 weeks later my stomach is still really swollen,think 6 months pregnant, lots of very hard bits around the wound-doc says this is blood - and lots of areas where I have lost feeling. This should all settle within the 3 months period. As the wound is at my waist difficulty in wearing clothes as they all rub the wound, plus swollen and really hard above the wound so wearing a bra is uncomfy after a wee while.
So apart from walking around the corner- literally-and a fab day out when my friend took me out in her car this week, I haven't left the house since my journey to hospital on 22 July. Oh and my birthday was spent on there too!!
I have to try to be patient, and not push it; as an example I hung put a few bits of washing this morning, which meant stretching and boy I am paying for it now. I have had such pains in my wound area since. However - as the surgeons explained - they had to really push and pull my internal organs around to get them back to where they should be, then had to stitch them to my abdominal wall, so there was a lot of bruising and stitching etc going on inside.
Hoping I might manage out a bit further next week and get into a shop!!! I mean online shopping is fab, but nothing compares to actually having a good rummage.
So really summer was just beginning as far as good weather was concerned, and now on the way out.......boo hoo. Still one good side was that I have lost around14lbs while in hospital and the same when weighed myself last week, since I got out. Just not been hungry and cant eat a huge amount, but that is fine by me.
Back to see consultant on 1/10 so will see what he has to say, however everyone has been very pleased, as I do still have my other health issues including the main condition AS, so I am going through a balancing act as operation needs me to rest and heal, AS needs me to keep mobile or I will end up in pain - still plenty of painkillers!!
Well dont know if anyone will be interested, but I just needed to put it all down, I know I always play down my health issues, but I must say difficult to do it these days, I have even on a couple of occasions e.g. went round the corner to get nails sorted, and the lady was firstly astonished at my age, then when I was telling her hospital I just felt that she thought I was exaggerating, so I just pulled my top up and showed her the wound, when she picked her chin up she was speechless, silly I know, what do I care what strangers think, but because I had made an effort and taken a long long time (for me) to put make up on and hide dark circles, put some colour into my cheeks, she didn't think my situation could be that bad!!!!!
For some considerable time I had been investigated by all sorts of docs due to my difficulty in breathing that was getting worse and worse. Eventually they discovered that my hiatus hernia had become a HUGE hiatus hernia, in fact they even changed its name to an intrathoratic stomach!! In other words instead of a little stomach sneaking through an opening into the chest area and causing acid reflux, my entire stomach and even part of my upper colon were all in my chest cavity, which combined with my bent spine meant that my poor lungs and heart were being squashed, hence the problems breathing.
They eventually agreed to operate, despite the dangers because of my other problems and of course the bent spine which also causes my neck to have very limited movement - not good news to the anaesthetist!! They hoped to manage keyhole surgery which would be 1/2 nights in hospital, or of they had to make a bigger incision 5/6 nights.
I was in surgery for 4 1/2 hours and straight to the High Dependency Unit where I stayed for 4 nights. The tubes down my nose had to stay in all this time, and I had to have oxygen all the time also, plus had the morphine on demand. They didn't manage they keyhole surgery - in fact cut accross my waist from one side to the other.
The stay in the HDU was a nightmare, I have no idea what were dreams and what might have happened, I seemed to think I was in different places each night, 1 night I was convinced it wasn't really a hospital at all and discussed my fears with some of the nurses, or did I??? Anyway they then sent me to the ward, however they then discovered I had a blood infection and sent bloods off to the labs. The results came back I had MSSA (same as Lesley Ash had) so I was whipped away to solitary. The antibiotics had to be administered by way of an IV, and there was a minimum time before I could get pills instead. they also discovered an infection in my throat, and I had a bad reaction to the staples, all 34 of them, they started jumping out my skin!!..... So in there for over 2 weeks. My veins also decided to misbehave, and when I came out both arms were covered in bruises. The same needle could only be used for a limited time, then they had to put in another one. My veins became such a problem I had one in my foot- it was also part of the reason I actually was allowed out of hospital with the antibiotics in pill form a little early than the lab wanted but the situation with my veins was so bad.
Now discover that the recovery period is 3 - 6 months, and now 6 weeks later my stomach is still really swollen,think 6 months pregnant, lots of very hard bits around the wound-doc says this is blood - and lots of areas where I have lost feeling. This should all settle within the 3 months period. As the wound is at my waist difficulty in wearing clothes as they all rub the wound, plus swollen and really hard above the wound so wearing a bra is uncomfy after a wee while.
So apart from walking around the corner- literally-and a fab day out when my friend took me out in her car this week, I haven't left the house since my journey to hospital on 22 July. Oh and my birthday was spent on there too!!
I have to try to be patient, and not push it; as an example I hung put a few bits of washing this morning, which meant stretching and boy I am paying for it now. I have had such pains in my wound area since. However - as the surgeons explained - they had to really push and pull my internal organs around to get them back to where they should be, then had to stitch them to my abdominal wall, so there was a lot of bruising and stitching etc going on inside.
Hoping I might manage out a bit further next week and get into a shop!!! I mean online shopping is fab, but nothing compares to actually having a good rummage.
So really summer was just beginning as far as good weather was concerned, and now on the way out.......boo hoo. Still one good side was that I have lost around14lbs while in hospital and the same when weighed myself last week, since I got out. Just not been hungry and cant eat a huge amount, but that is fine by me.
Back to see consultant on 1/10 so will see what he has to say, however everyone has been very pleased, as I do still have my other health issues including the main condition AS, so I am going through a balancing act as operation needs me to rest and heal, AS needs me to keep mobile or I will end up in pain - still plenty of painkillers!!
Well dont know if anyone will be interested, but I just needed to put it all down, I know I always play down my health issues, but I must say difficult to do it these days, I have even on a couple of occasions e.g. went round the corner to get nails sorted, and the lady was firstly astonished at my age, then when I was telling her hospital I just felt that she thought I was exaggerating, so I just pulled my top up and showed her the wound, when she picked her chin up she was speechless, silly I know, what do I care what strangers think, but because I had made an effort and taken a long long time (for me) to put make up on and hide dark circles, put some colour into my cheeks, she didn't think my situation could be that bad!!!!!
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