Friday, 24 June 2011

More wonky body stories, or the story of my breast screening

I did a blog last night on hurdles to be overcome at hospital, as I was thinking about my visit today to the breast screening clinic. I was there this morning and I can honestly say, it was pure and utter torture!

I had 2 nurses, the more senior one had seen me the last time, so was all ready to deal with me and my problems. She had the chair ready, as we had found it was impossible to “do” me while standing last time.

So, there I am sitting in the chair being ordered to sit up as straight as I can - my spine is almost totally fused and bent - so me and straight do not go together!! My neck has little movement too, so imagine trying to sit up straight as possible, and twist round from the waist and hold head up and twisted back out the way of the machine…………... After much pulling and pushing they get you as near to the position as they can then the machine comes down and you feel as though your breast is going to explode!! (I would remind you that my back is made od lots of metal work which gets in the way of twisting round, and my middle section is still very tender of the surgery last year). And that is just stage !, they then have to do the other side, then full frontal mode, which was just the same but at a different angle on both sides. Back, neck and hips are clicking and having spasms, shoulders aching, sore head with it all and then even the bloody boobs are sore and tender!!!!

On the positive side, the nurse did say that I should think very very carefully when I get the next invite, if I want to go through this again, she admitted she had found it stressful too knowing how much she was hurting me. The alternative would be to attend GP’s practise nurse for exam when needed and if they wanted, they could organise for an ultrasound exam to be done instead of the one I had.

After all that, I waited for the pictures to come back, and although the quality was good, there wasn’t 100% of my breasts in the pictures.

Oh well………………………

So more painkillers to see me through the next day or two, might even have a wee scotch now, and just as well I stopped smoking or I might have gotten through quite a few!!

Thursday, 23 June 2011

How they cope with wonky bodies in hospital

I am going for breast screening tomorrow and I was pleased to note that they had put on the letter that I had been allocated a longer than normal appointment. At least I am assuming this is because of the problems we have encountered in the past trying to get my body into shape to allow me to fit in the machine. We tried standing in the usual way, tried sitting, tried different technicians until we managed to get the picture taken, and confirmed it was ok. I remember leaving there a little sore after being pulled and pushed into position.

I was sent for an MRI recently on my head, that was just a joke as there was no way on this earth that they could get me into position never mind stay there for 20 minutes. It seems there are MRI machine which can be used, where appropriate, with the patient sitting, now that would have been doable!

A couple of years ago I had a C T scan, that was however on my middle and with copious pillows, we managed to get my head and legs supported so that we got my back as close as possible to the position required. But, again, I don’t think I would have managed this on many other areas of my body.

When I think back to the many and various X-rays taken, bone scans etc I cannot understand why there is such a commotion to deal with someone like me. When I look around the waiting rooms I see many, admittedly mainly elderly, people who are obviously with mobility issues and movement issues - how do they cope??

Are the machine simply made in the one way, or are there variations of the machines but due to cost hospitals don’t/can’t afford to have more than the basic model? As I said on an earlier blog, I am not that unusual, maybe a little more extreme, but there are all sorts of physical disability that would make these machines difficult, surely?

The other big problem I have found is anaesthetic, they have quite a problem due to lack of movement in neck and jaw/neck restricts how wide the mouth can be opened. Last year the doc put the tubes down my nose, the tubes had to stay in for a few days afterwards so I ended up with thrush in my nose/mouth - lovely! I wont go on about the surgery, as I have already described it, simply put my hiatus hernia had allowed my entire stomach and part of upper colon to move up and into my chest cavity, thereby squashing my lungs, So they pulled everything back into place and stitched stomach to my abdominal wall, however as I was not flat on the table the couldn’t find the hole (hernia)….which is a little worrying in case anything else goes walkabout!! Again the stoop was the problem both in the operation and because they think that once the stomach started to pop through the hernia it more or less got sucked up……….

There are, of course, all the smaller annoying problems, e.g. they never have enough pillows, whether to support you for tests, or if you are an inmate - to be comfy in bed (I now always take my own pillows in with me!) Even popping up on the docs exam table, for me needs the back to be raised and then a couple of pillows to support my neck, and I always just ask whoever it is, do they want top or bottom half to be flat, because the can’t have both, to get as flat as possible top half, need several pillows under legs, plus one under head. I do find I get frustrated as only a few docs will ask what do I need to allow them to carry out whatever it is, but most just kind of hover looking uncomfortable, so now I just ask them what they want and direct them.

And as for dentists!!!!!!!!!! I now have a lovely lady who has no problem at all, we just work together, I have had a few who found me to be such a nuisance they would sigh as they tried to carry out the exam…..I would get so angry then upset, but this lady saw me as usual dentist was on holiday and as I started to explain, she immediately said it was all ok, we would simply work together………Now there's a novel idea!!!!!

Wednesday, 22 June 2011

Being an advocate for Ankylosing Spondylitis

Masquerade of Words (Spondylitis Blog Carnival) is a new group which I have joined, and as it says, it is for blogs related to AS. Subjects for discussion were Guilt and Being an Advocate for AS. I have dealt with the Guilt blog, so now onto Being an advocate for AS.

On consideration I do consider myself to be one, I have always told people what was wrong by name, rather than just saying a type of arthritis, though often did have to end up using that description as few people had heard of AS. During the years, when I had major surgery on my spine, I told people what had been done and why. When I kept breaking my back, I would explain why. When I had what felt like almost continuous iritis, I would explain the what and the why.

In the early years I looked quite "normal" so there was always the feeling that people didn't take AS that seriously, after all I looked fine. In fact I used to get so bloody sick of people saying "but you look so well" as though I was making it up, however if they came upon me during a flare...... Even doctors would come out with the looking good condescending type remarks, which led me to believe that unless you were obviously unwell or screaming in pain, no one really took you too seriously.

Well despite my efforts, and partly because too much damage had been done in the years it took to diagnose my AS, no one can now be in any doubt that I am not fine. I am very stooped, very little movement in my neck and so on, so now when people ask what is wrong, they have a much better idea of what is involved, and they no longer say how well I look - actually they do as I am not pale and feeble looking - but I explain that is to do with a good attitude, good makeup- and red hair dye!!!

I have always been up front with people regarding what is wrong, and, unfortunately, I am now a walking and talking example of the wreckage of a body it can leave you with. I actively take part in various groups and blogs to widen the knowledge and understanding, of those with AS or other chronic conditions. I hope in my way I help family and friends understand what we go through, and that the information and experiences imparted by myself and others like me, might help newly diagnosed people deal with their situation, and encourage them to strive for all the help and medication etc that is out there. This may, in some small way help them to have a better outlook than people of my generation.

I do worry sometime that people consider that I am simply feeling sorry for myself, or like to talk about myself all the time, I  have had this awful disease for 2/3rds of my life, it rules my life, but maybe if the treatments and drugs that are around now had been available then my life could have been much different, so I am passionate about making sure that all newly diagnosed people have as much knowledge as possible made available to them so they have the best chances possible.

Tuesday, 21 June 2011

Guilt; such a little word that encompasses such a lot!!

Many of us with Chronic illness suffer from guilt in many forms, e.g. guilt when you have to cancel appointments at short notice when you aren’t well enough to attend; guilt when you do make it out but feel you are the nuisance who needs to be able to get a seat and that you don’t have miles to walk to reach the toilets; guilt when you feel you are having to ask too often for assistance just to do ordinary everyday chores; guilt because you have to cause extra expense to pay someone to carry out the jobs you can no longer manage; guilt when you look around your home and realise that you need a shower, the bathroom needs to be cleaned, and a pile of ironing is waiting, knowing you have to chose the 1 you CAN manage, and the rest will have to wait; guilt when you see the shabbiness in your home, but as you can’t afford a decorator, it is renamed shabby chic. I could go on, but you get the picture!

Then we can move to the workplace: guilt when you are afraid others might feel you are not pulling your weight; guilt when you know you have had a bad night and so you will not be firing on all cylinders, but you must go in; guilt when you do have to stay home sick as you know others have to cover for you……

I find there was a constant battle to find a good balance in my life, but I am afraid I failed miserably as I now have virtually no social life, and have not been on holiday for several years. Why? Guilt; because if I want to enjoy myself and not be a burden on others, I need so much organisation to make sure I am comfortable. I need a plan of how to get there and back and I cant cope with long lines queuing.

I live in Edinburgh and I used to love the summer when the city comes alive with the tourists then the various festivals. However, most of the venues require you to queue outside as no seats are book able, the shows, in particular some of the comedy ones, are on late at night, which in another life was no problem, as I live in a fairly central location, we would simply walk as it would be after the buses stopped running and there would be few taxis around. Not now, so either I am a complete nuisance to everyone, or simply stay home. I cant cope with the payback when I am not sensible, these days.

Because I try to be cheerful and smile etc - I found before I became as bent as I am now, that people would not necessarily think I had a chronic illness, so sometimes I would get strange looks from people when friends would make sure I had a seat etc, at least now I am very bent and need a stick, it is patently obvious there is something far wrong, so I don’t have the guilt making me feel the need to explain - strangers don’t need the details, they can now see as much as they need to know!

So really the bottom line is that I find there is a terrible feeling of guilt as my chronic illness affects so much of my life, and therefore the lives of everyone else around me. In my case this has meant a virtual withdrawal…from life, the guilt is too great.

Thursday, 16 June 2011

AS and clothes

I was sorting out my wardrobe today, far to many clothes combined with a Scottish climate means wardrobe needs to be sorted regularily.

The amount of clothes can be excused, honest, because, basically, of my AS. For a start there are the ones to cope with different sizes, or just tents, because my weight tends to change quite a lot. At the moment it is quite big becasue of enforced lack of mobilty for far too long, hopefully as weather is getting a little better might manage out more and hopefully lose some of this excess.

The sizes vary considerably also, depending on the cut, as my back is so bent the width is greater - try bending forward and circling your shoulders forward and see what I mean. So shape and cut have to cope with this "spread  back" without being baggy at the front, can't be too straight cut as the bum sticks out (I know it is too big, but thats just the way it is). Often getting enough material to fit the back means huge shoulders etc.

Then there is the neckline. Cant be too low, as bending forward could end up flashing more than perhaps intended, can't be too high, as strangulation isn't a good look either!!!!

The length brings its own problems as too long can really cling to back and enhance the bend, but too short, made even shorter by my posture, can be just plain unflattering. As I already mentioned, have to check back and front for length as tops will not be the same length all round, but dresses are out altogether. All the lovely waterfall cardis can end up with the already longer front trailing on the ground while the back quite short - again accentuating the posture.

So you see it is so difficult to get better than "it fits, so it'll do". Late last year a bought a tunic type of fine knit top, loose round neck and much wider at the bottom, didn't strangle me, and the wider bottom made it not too bad, I now have it in black, purple, red, light blue, light mauve and turquoise........ I found last summer a 3/4 length sleeved top, loose and comfy, now have it in black, light grey, blue, pattern with purples/lilacs, different pattern with autumnal colours, black and cream stripes. But worm differently and with different accessories..........

Trousers again have problems with waist fitting, depending on the cut can be far too low on the back and high at the front, almost always wear loose pull on types now, much easier. Also found that as a result of my back surgery 20 or so years ago, 1 leg is shorter than the other, not so anyone else would notice but I see it on my trouser length!

Having discovered Clarkes unstructured  soled shoes, I can wear nothing else now, luckily they have many varied and different styles and colours. I wore a different type of shoe on Tuesday, my feet are still aching. Obvioulsy they are not shoes with heels but I make up for the lack of that kind of style, by wearing more colours, particular favourite being pink!!

So there you are, a few examples of how this sod of a disease and what it has done to the old bod, affects so many things in my life.

Tuesday, 7 June 2011

Travel with disabilities

I love holidays, well at least the idea of them!

Ok, you roll up at the airport, and drag your suitcase, while carrying your hand luggage up to the check in desk, luckily usually not too far, and get checked in, and pray that your name is on the list of people allocated a wheelchair, (usually, in fairness, all the problems with this are usually on the homeward part of the holiday). You then have to sit and wait in the corner for someone to turn up with said chair. (never, ever offer to walk any further than to go to the waiting area, or your name will be whipped off that list before you realise what has happened!) You are then taken to the departure gate, and placed in position ready for a quick take off when the flight is announced ready for boarding. Now, this is when you try to be really charming, and hint at decent tip, if there is any chance of a wee stop at duty free to pick up your holiday booze, some are so pleasant and helpful, while others just refuse as not on their job description. But don’t despair, you can usually find one near to your departure point where you can manage to either send your travelling companion, or get them to push you!
As you are in the chair you are taken on the plane first - if they get back for you and don’t forget! Usually this is my flight from Edinburgh to Heathrow, so just time for a coffee and rest in flight, before the next stage, remembering that no matter when your connection flight is leaving, or how far away it is, you will be last off the plane. Always take this into account when making bookings!

If all has gone well, someone with a chair will be waiting when the plane has emptied and they already know where we are all going, and when we need to be there. So off wee shoot, and another good point is that you - and companion - get through all the searches and passport control etc first, so you can get taken to the departure gate and again left for the announcement for boarding. Same happens again here, 1st on, last off, and out to taxi rank and hotel here we come.
One of the problems many of us face on the journey out, in particular, is the transport of prescription drugs, and of course if you are on any kind of injection, it might need to be kept cool. It is always advisable to carry all drugs in hand luggage-to make sure they don’t get lost- and injections in a cool pack, it is also worth checking with the airport if a doctors letter is
advisable, remembering the xray machine will show all these syringes.

Well we have arrived now, between jet lag, exhaustion, etc etc I usually try to time my arrival for late afternoon, so by the time you arrive at the hotel, check in, unpack etc maybe have a wee wander for a look around & have a snack, its time for bed. I usually push myself to make sure all this is done, as it is horrible to wake up to it all in the morning. If you have injections that need to be kept cool I will have arranged for a wee fridge in room.

Normally I am on holiday with mother and neither of us would consider driving abroad, so all outing are arranged there on tours. These can make or break the holiday for me, as the way the tour manager handles your disability can make such a difference. I have had some fabulous ones who quietly and unobtrusively will ensure you are ok, and never make you feel like a nuisance, and you also get the other kind…..
Then there is the return journey to look forward to. I have to admit that each time in the last few years that mum and I have been to the USA, when we land in Heathrow looking for the wheelchair to get us to the connecting flight, despite having cleared with the cabin crew that you are on the list, there is always some reason why no one is there to meet you. Usually that there are not enough chairs or people to push them! I don’t think I have once made the connecting flight as booked, luckily there are frequent flights so get home eventually. But then this where I have seen the most infuriating sight, of elderly, poorly, disabled people, on realising they might not make a connecting flight, leap with gay abandon from the wheelchair and gallop up the corridors and disappear round the bend!!! No wander there is such a shortage of chairs and staff, when so many are being used by people who, quite frankly don’t need it! This has not been something I saw only the once, I saw it every time, several of the people in chairs would simply say they were not prepared to miss their connecting flights and walk off. Once we had to get out the chairs to be lead to a waiting bus to take us to the plane, and I kid you not I was manhandled out the way by some of these people who had been in chairs to make sure they got a choice of seats on the bus and would be 1st off and therefore 1st on the plane. The laugh is I got the dirty looks for taking so long…………………….

So yes I love the idea of holidays, but sometimes wander if it’s all worth it.

Monday, 6 June 2011

The Indignities of hospital stays

Can someone explain to me why it is acceptable to assume that on entering a hospital ward you are willingly and happily giving up all rights to dignity and privacy? You are assumed to have lost all inhibitions and somewhere along the way, intelligence.

I appreciate that wards of 4 or 6 are a huge improvement over the large wards of years gone by, but ward doors are left open all day, to enable the nurses to see into the wards, so trying to get some privacy is difficult. There is one wet room per ward of, say, 6 which contains the toilet, wash hand basin and the open shower. So unless you are in there first, you cannot get dressed as it is wet - every where -, and you even get your feet wet going to the loo! So you have to dry off and dress by closing your curtains. However, as  the nurses open them without a second thought,it is not the most relaxing of circumstances. Even trying to put a little makeup on, sorting your hair, is all there to be viewed by the passing world. I have to admit to not having many showers during my last stay, and rarely dressed, for those reasons. I would wait till the cleaner had been before having a wash and dress as the shower room would be considerably dryer then.

I also get quite irritated by the fact that the doctors/ nurses, discuss the most personal of details with you with only the curtain closed (sometimes). They might think nothing of it, but I get a little embarrassed by discussing things in front of total strangers!!! It is also just as unsettling listening to this happening to others around you.

While I understand that nurses have to work on the premise that they are responsible for your wellbeing and take control of all your meds, I do so dislike being talked to as if I have a problem understanding them, even being addressed as “dear”. An example,  I have eye drops and I asked to keep them so I didn’t have to ask for them all the time, yet when the nurse would come round with the drug trolley, she would always ask, “now have you used your eye drops dear?” aaaaaaaahhhhhhhhhhhhhhh!!!! I often had to grit my teeth and not make a cheeky retort!!  At home you are trusted with, in my case, a supermarket carrier full of pescription drugs, yet when in hospital when you request something you are expected to make a case for why you should be given the painkiller, or whatever.

On my last stay I was given an additional pressie, MRRA, so was promptly whisked off to a room on my own. Apart from the inconvenience of antibiotics being given IV, I had my own shower room, privacy as I could keep the door shut and even close the blinds, I could watch TV till whenever, as I couldn't disturb anyone.....bliss! Still a tad extreme way of acheiving it.