Saturday moan

Well that takes the biscuit!!

My OH works nights, which means he comes in at 6AM, and immediately goes to bed till early afternoon - so every morning I have to tiptoe around the house so as not to wake him. Once he wakes up I can run around and do whatever I have been waiting to do.

I get woken by him coming home most mornings, yet when I go out he always says that he heard nothing- not surprising as one day I was out and forgot my keys had to buzz, phone for around 10 mins before he heard me!!!!

Didn't sleep very well last night, so Milo (cat) and I had a cuddle, I had cuppa and read for a while,so had just fallen asleep when OH arrived home. I had a cuppa with him so I could tell him mum didn't need any shopping. This means he only has ours to get so he could choose when he would prefer to go shopping. He decided to have a sleep till 10 before getting up and on.

I managed to have a doze (most unusual for me) and woke a wee while ago. Made cuppa, switched on laptop to make sure mum hadn't realised she did need something, when OH gets up wanders in asks if I want a cuppa and then in a sarcastic voice ask if I want the cuppa in living room or in my bed!!!!

I am happy warm and comfy here so staying for a while yet - and why not!!!! He is going shopping then will be back home into pj's and into his bed to watch horses, footie, rugby whatever sport is on, then will go to sleep - so from around 3 till 8 I will have to be quiet, tiptoe etc also eat alone as I need to eat early with HH.

As I had to retire early on health grounds, some how the fact that he works and I don't, means that my life is of no consequence- its fine I have to tiptoe around while doing all the house work-except dishes on Sunday morning,(although that doesn't include rinsing the sink, washing down work tops, drainer top etc etc) As he only has a couple of hours in the afternoon to play on the computer-watch horses- I can deal with the house, after all I have nothing else to do! HELLO I had to give up work due to my health!!!! I end up doing all sorts of things I shouldn't do,then have to hide the fact from mother or I would have an 80+ year old down here doing the work!!! However he is totally oblivious to dirt,untidyness etc or if he sees it just assumes HE doesn't have to worry about it as it will be dealt with!

So I shall finish my coffee and ciggie before getting out of bed, he will be off to hunt for food - OK go to Tesco just round the corner- and then I will run round with hoover (piles of cat hair everywhere this morning) put a wash on, tidy, do any dishes and wipe down,clean sink etc and be sitting comfortably when he returns.......... and then will relax with papers and V+ TV.

OK moan over

Have a fab Saturday everyone

Getting work done

Why is it that when you get around to organising work to be done in the house, you suddenly find yourself with a whole load of cleaning to do!!

I have a trellis out back leading from the window to the ground, used as a ladder by the cats. Originally done for a cat I had some time ago who was old and not too well, so that she could get out and in easily as the window cill was too high. However it is now falling to bits and dangerous for my current pair of cats to use safely. Also the cat flap got broken some time ago when they decided to have a fight in the cat flap, I am getting it replaced also.

Realising I am not sure how he will fit the cat flap ie from the outside or inside, decide to move the laundry basket to create room-however as it has not been moved in quite some time, realise the floor needs to be swept then washed. Of course then notice the tops of the washing machine and dryer are a bit grubby, decide to move the washing products and packs of cats food to wipe them down. By the time I have finished I see the kitchen sink is really dirty, has been a bit stained looking for some time so get out the various cleaners and start scrubbing. By this time the kitchen floor is looking the worse for wear so have to clean it. Rest is needed by this time along with a couple of painkillers.

Looking around with fresh eyes after a rest, realise the hall carpet is filthy - the cat with long black hair insists on having a good scratch in the hall and leaves big chunks of hair there daily!
So out comes the hoover.............

After all that realise when he is fitting new door handles that the edges of the door round the glass panels are filthy- oh the shame!!!

Well he has been now so all I have to do is put everything back after realising he is a man and notices NOTHING!!!!!!

Ok cuppa and feet up and watch Tv.............

Well another nervous visit to the hairdresser, however was brave and went with my thoughts of having a complete change. Have had blond highlights forever.....now red, bright bright red.....and I love it!!

Will take a bit of getting used to, have been in a state of constant surprise when passing mirrors and realising it is me.

I know it is ridiculous, but when you are 4 inches shorter than you started out because of your posture; often struggling to walk with stick because of bent back or pain, or just the ever present exhaustion, made even worse at the moment because of the huge Hiatus Hernia (I am told most of stomach is in chest cavity), so with little chest expansion because of bent back and half of a lung being squashed by stomach am now huffing and puffing all the time in an effort to breath;I use hair-makeup-jewellery-handbags, to take my mind off it. Also people tend to be distracted by these other things going on and don't notice the rest - that may be wishful thinking, but allow me that!!!

Anyway tomorrow will start with some experimenting with make up to go with new hair colour. Unfortunately mother was getting her highlights done today also, and there are none to be seen!! She is having to go back to get them re-done on Friday.....

So its 6.40 on Monday evening and I am all tucked up in bed!! so bloody tired, plus OH will be getting up soon for bath, and snack preparation before night shift - I prefer to be out of the way, makes life easier. I might tiptoe around all day when he is sleeping, but when he is up there is no consideration shown. Not sure if it usual lack of thought shown by men, or if it is a touch of the "I am the only one working.". That's when I would really like him to walk in my shoes for a day, both in terms of health issues, but lack of being able to do whatever I want- I often don't have any meal in the evening in case I wake him up...oh moan moan. Try not to do too much of it but at times it is hard not to.

Well will be off to see who is around on Twitter to chat to.

Some New Thoughts

Thought it had been a while since I had a ramble so here goes...

Feeling very down, after all the health issues since the beginning of December, ending with the bad reaction to antibiotics - combined with the weather have managed to be stuck in the flat for over a month. Put paid to Christmas, of course, but not a lot could be done about it. The wore bit now is I have been left with a sore and stiff neck.

For most people this would be a real pain (!) but with my AS it is very depressing. My posture, bad enough at the best of times (AS causes a bending of the spine)is now just terrible. Bent right over so cannot raise head to look much further than the floor in front when walking.

Most people will assume that as I am so bent normally this wouldn't be too awful, but I can assure you it is a huge deal. It makes me feel such a freak, I know people will all be looking at me and when you get the "aww poor soul" look it just brings it home how awful I look. Ok maybe I shouldn't get so upset at how I look, but when you are all distorted like this it is bloody painful too. Not pain - in this instance- in the neck,though this is pretty bad, but when you have walked for a wee while its all the other bits of your body that are having to compensate.

So as I have had to cancel a hairdressing appointment, my next one on 1 February, has had me trying to think what to do. Need cheering up and fancy a change. Had blonde highlights for most of my life so fancy a change. After some chat on Twitter I am thinking of chocolate brown with damson/plum highlights. As I remember telling a work colleague a few years ago, If I keep the hair looking good, wear the make up, chunky/funky jewellery, then it helps to keep people looking at those things and not the rest of the twisted old body!!

Got a meeting with surgeon in a couple of weeks, will be interesting to see what is decided. My hiatus hernia has caused,I am told, most of my stomach to now be settled in my chest cavity,which combined with my bent back means that I have been finding I get breathless very quickly. The problem now is that as we have checked via xray's and cat scans there is no reason apart from the above for how I have been, should we operate to shove the stomach back down to where it should be. One of the main concerns,as always,is that because of my AS I have very little movement in my neck (even less at the moment) which make it difficult for the anesthetist. Oh well will see what he thinks.

If weather ok later today, hope to get dressed and wander round the corner. Have a fabulous wee shop which sells jewellery, handbags, scarves, candles etc etc, usually try to avoid it as there as I always seem to see something I just must have. The last time was a handbag - but it is gorgeous and I have lost count of the number of times I have been asked by strangers where I got it. Still could do with a little cheering up.

It would be so nice even just to chat. The owner of course knows me quite well by now and we usually have blether, though not very good at this at the moment. When I am going through a bad time, pain wise, I do tend to withdraw, even on twitter, watching and interested just not joining in much!!

Well maybe I should try again to get some sleep.

Catchup

Ok time to do another blog.

Been quiet recently, not sure why, just feeling a bit down and everything a bit of a struggle. Not been out much or been with other people so I find I quickly get out of the habit of chatting – or blogging or even twittering!

With reference to earlier blog re hairdresser, I have had to throw in the towel re current one, hair never right and condition a mess due to colour having to be done twice, so decided today to take the bull by the horns, as it were, and make decision re new one. Went by atmosphere and how busy it was to choose new one, but of course no idea of the individual who is cutting my hair, in 2 weeks time!! But the salon was busy and buzzing, and the people all looked happy, and the hairdressers all seemed to be male and not kids.

So at the moment I am still at the excited stage, which as you will know from previous blog, will soon change!!

Doc is arranging for me to get Botox, my left eye had started to twitch several months ago, and it has been steadily getting worse, till I now feel like I am pulling some strange twisted faces at time. There is no medical reason he can find, so they are going to Botox the area so it will stay still – just hope they do both sides!!

Got appointment for physio, which is good, although have waited a while and can’t see them for triage appointment till 8 June. But hopefully will help left arm, which is also steadily getting worse. Just part and parcel of back problem.

Red blood cells are doing ok at the moment, but doc trying to get the weekly injection I give myself to also include iron. This will help with red cells, and also be much easier than taking iron pills or syrup all the time, as they really upset the tum.

Was also at eye hospital and the eyes are doing ok, and the floaters I can see in my left eye, are bits of old cells coming away from the jelly bit of my eye. I have had so many incidents of my eye problems that there has been a build up of these old cells, and they are detaching, but will eventually go away.

So all the bits are being sorted out, and hopefully mother and I will get away for a few days or so up North to relax. Been looking forward to getting away for a while, but need to get all the above sorted as no point of going away and being miserable etc etc

Well thats caught up for now, off a drink and ciggie!!!!

My addled old bod

Been thinking about all things health orientated, so decided to review my situation.Started with 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. By this time there was severe damage which was why it was spotted on the x-ray-the vertebrae fuse together and cause bending forward which in turn causes neck pain among others. By this time I was married and in early 20's. One of the things I was told at this time was that unless I could not live with out children this idea should be given up as my spine was not strong enough.This went on for several years, taking painkillers and anti inflammatory. Then one day had a strange eye, went to see GP, nothing to be seen, but 2 nights later he appeared at the house in his can and dragged me off to the eye hospital where I stayed for 1 week. A side affect of the AS, 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 a year, just had go straight to the eye hospital as speed was important. Only had injections twice more and 2 other stays in hospital. Got to be very good at recognising the signs 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 react badly to the drops, unfortunately, and it causes the pressure to build up in the eye - this can turn into glaucoma. 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 after the AS was diagnosed, at New Year, I fell on the ice, and landed on my back, I was carried home by a doctor and fireman who lived nearby and put to bed by my neighbour, a nurse. However in the morning in a great deal of pain, so went to A&E. It was chaos, being that time of year, and I was treated as a nuisance by the nurses. However, after x-ray, it was discovered a vertebrae had smashed. They tried to keep me in, but the only bed was in a ward full of elderly people moaning-as the only treatment was bed rest, I was discharged. That was the first time. Second time was a few years later when someone pulled out a chair as I was about to sit on it. I was told later that because I was not screaming and crying when I saw my GP, they decided it could only be bruised, however when I went to see my consultant at the Northern 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 they sent me home and made arrangement for an x-ray. They also insisted that they would come to me till they were satisfied with my situation. They also instigated further investigations which eventually confirmed I also the old bones had gone and had osteoporosis. This combined with the AS means I have to be very careful of falling over etc.In the meantime discovered a hiatus hernia and underactive thyroid. The thyroid and AS both have as a side effect, fatigue, that explained my continual exhaustion. They also discovered that I had a lot of irritation in my tum and guts due to the years taking anti inflammatory, and I was anaemic. Again, fatigue. So could only take painkillers, which really don’t so it for the pain. However a few years ago I read about a very new injection which had been used for similar conditions so spoke to my consultant at the Western - I qualified- so started with initially twice weekly self injection, the dosage was double 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.In fact it caused a heart murmur because of the all the extra work my heart was having to do. This was also a problem as after going to GP with a list of my symptoms, including breathlessness, dizziness, exhaustion, heart thumping, the first GP sent me home with stress. When I went back a different GP immediately gave me a blood test. By 5 that evening I got a phone call telling to get to the WGH immediately and to take an overnight bag. When chatting to the doc there I told him why it had taken so long to get to the stage of getting a blood test, he asked to see my list-as I had typed it out, I had taken a copy – he read it through and said that if any doc on his ward had not immediately taken a blood test with this list he would get rid of them – he went on to ask if he could keep it as a training tool.

This is currently being investigated, and a few weeks ago, after several endoscopies, in both directions, got the camera pill to swallow, still awaiting the results.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 the put me in plaster on the Friday - should have been longer before the plaster but it was coming up to Christmas. 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 bottom of 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 scaffolding I was carried over and laid on this structure, with pipes running under my ankles, 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. When they were done, carried back and sat up as they had to make sure the plaster wouldn't be too high to choke me, or too low so I couldn't sit properly. The laid down 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.

That was an interesting stay, with various problems. I complained that the arm with the drip felt funny and I was in considerable pain. They turned up the flow of morphine, eventually I lost all feeling in the arm and it became very swollen – the morphine was going straight into the muscle!!! Had to learn to walk, to get washed with 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 20 months. Then I was fitted with leather an metal strap on body brace, which was bliss as I could take it off at night. That was used for another year.

So between the painkillers, the injections, thyroid pills, hernia pills, iron pills, calcium pills, osteo pills, eye drops, I get a shopping 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 – see moaning blog.

Well enough for now, need a drink now I think!!

Moans for the day

Feeling a bit fed up today so decided to put down my feelings.

I had to give up work a year and a half ago due to health problems, which was fairly traumatic, partly because of the feeling of stress before I left due to a really horrible atmosphere in my work place, and partly because it was having to admit I couldn't struggle on any more. Luckily I had great help from my GP and of course family. There was, of course, the basic changes to life style, including no purpose to my day and lack of money. My work pension is peanuts, previous work pension even smaller,no state pension as too young. Discovered I qualified for Disability Living Allowance, which helped, even getting a free travel card sue to disability was a great help.

At first I quite enjoyed it could have music on and potter around to my hears content. Make as much noise as I wanted and take my time to try and keep the place in order. However soon after my partner had the chance to change his position at his work to gain extra money, but more importantly to work inside. I supported him in this- after all he had fully supported me with my changes, but I have to admit I really didn't fully understand how this would impact on me.

He arrives home around 5.30AM this is of course me wide awake then, although he has his own room-easier all round for all sorts of reasons, he then goes off to sleep. So I then find myself with several hours of tiptoeing around trying to make as little noise as possible. He gets up in the early afternoon which is then spent in his room on his computer or watching sport on his TV. This my time to do anything noisy -hoovering etc. He then goes back to bed around 4.30 till 7.30, so back to creeping around. We each have our own meals at night as he eats much later than I can. Then he is off at 9.

He also seems to feel that as he is working and I am not, that the house is up to me. He does little and sees nothing. Dirt, untidiness are all things he is completely unaware of. He forgets I gave up work as I couldn't keep going physically-I mean the last time I broke my back (that's right the LAST time) was hoovering and bent down to pick up a bit fluff and CRACK! It gets very frustrating just trying to keep on top of things and the standards are not as I would wish, but have to accept. I cope most of the time, but all it needs is for someone to be visiting me and I get so uptight. I have a friend visiting tomorrow, and have started worrying what she must think...... silly really as she knows my situation very well.

Then there is the general shabbiness, but although I have to money to do some work, afraid to spend it as so little coming in.

Yesterday, was so good, the sun was out so I was able to get out and about, met mother, had coffee, look round the shops, bought a couple of wee things, and it felt like I was on holiday. Today back to rain, so sitting in living room - quietly-and churning a bit...

Looking forward to the improvement in the weather as it does mean I can escape - that is the correct word - although often I come home pretty knackered, and might have to go to bed, at least felt part of the world out there for a while!

I am waiting for some hospital tests, which when sorted out, will hopefully mean that mother and I can get away for at least a long weekend - up North, and have a wee break. No holidays of any kind last year due to health issues.

Well enough moaning for one day!! One of the good things about Twitter is being able to chat or just "listen in" to others, and to know others are interested in you..Byeeee for now