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!!!!!

The end of smoking

Well today I reach day 6 of no smoking!! While I am very proud of myself, I have to admit to not really being tested yet.

I think that like dieting, you have to be in the right frame of mind and be ready, otherwise it doesn't work.

I really needed to do this for health reasons, my huge hiatus hernia to be precise. I have been having problems with breathlessness and when I lie down in bed at night I sound like a set of bagpipes tuning up!! Apparently most of my stomach is in my chest cavity and squashing half of one lung, combined with my bend back which of course causes constriction on my chest and chest expansion, and apparently I have a veru small chest cavity anyway - well its all getting a bit crowded in there. Surgeon wont consider an op at the moment as it would need to be such a major one and I am a problem to operate on - because of the situation described!

I manage the HH quite well with what and when I eat etc, and the xray/cat scan all show lungs are healthy, so I owe it to myself to quit smoking. So nearly 1 week in have developed horrible cough, cannot sleep- but I am told this is all quite normal. Onwards and upwards!!!!

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.