Reasons to be Cheerful

As started by Teasrose68 at Tilting at Windmills

I was busy trying to think what I could come up with. There were a couple of obvious ones, for me. When Milo (cat) wakes me up in the middle of the night just to say hello, give me a kiss and snuggle in.

When I tidy out my wardrobe or jewellery boxes and come upon something I forgot I had, such a lovely surprise.

Then today my friend Tabitca had her second novel published on Kindle as an e book, and she had put such a lovely mention of me in it. Fair warmed my heart!

Later in the day I had an e mail from a lady who had come across my blogs some time ago, had read both lots and asked me to read her book about her mother’s illness, RA. She had also seen the article I had done on my story with AS, she had used this as a basis for her blog, which she chose do about my life. I was very touched by that. 

Then my friend Cookie left such a super comment on the blog.

I am left feeling a very ……I am not sure what adjective to use here, happy, touched, but certainly a reason to be cheerful!

Now this is what I call service

After my couple of situations recently with what I consider to be poor customer care, today reminded me what of what it should be like.

A couple of weeks ago, I bought a pack of hangers from Lakeland. I loved the look of them, animal print, and they have a bar for trousers, plus the material they are made of is not smooth so clothes won't fall off easily. I got them home, admired them and then used them all. 2 days ago the one holding a lightweight knitted tunic top, collapsed and I found the metal hook in place, but the top and hanger on the floor, the next day the same thing with a pair of lightweight joggers, with a vest! I was displeased and so wrote a review pointing out the plus points but that might be safer to use them for only the lightest items in your wardrobe.

Within a couple of hours I had a phone call from Lakeland. The lady started out by apologising for the inconvenience to me, She explained that although they were a new item, they had sold thousands of sets and had received no complaints, however there might have simply been a bad batch. But would I please accept a replacement set, and would I be prepared to use them then report back if I had any more problems. As she explained, they could not put it right if they don't know about it, and thanked me for taking the time to make them aware.  She also explained they had not published my review, but were happy do so if I wanted them to. I said no, that I would try the new set, and let them know by a review, how they are.

What a difference.

Mini blog

In my last blog on Wednesday, one of my moans was about the lack of  service from the Nationwide, and I ranted about my phone call on the previous day (13th) which ended up with the lovely lady I was speaking to saying she would get it sorted out, but I would have a further 7-10 days before my transaction (closure of account and cheque for the closing balance) would be processed.

Today I received two letters, first contained a statement, showing a closing balance of £00.00, the second, was a stock letter, undated, with a cheque. Cheque dated 13th!!!
So the Nationwide do have some staff who can be pleasant and efficient, such a pity they are not in my branch!

That has made my day.

Angry old woman

Ever felt like something was conspiring against you? I am normally a reasonably calm, outgoing kinda gal, but the last couple of days………….

Firstly, I had had a disagreement with a bank. I had a current account, and a savings account with them for several years. The funds in the current account were never used as my main current account; it was an account for holidays, or unexpected expenses. I went to buy my new laptop a couple of months ago and had the embarrassment of having the card turned down. On investigation, I realised the card was out of date, and no new card had been sent out. I phoned the bank,spoke to man in Basildon), and the man checked the computer and confirmed that the account had no new card issued because of lack of use of the account, I checked the card for the  small savings account, no new card had been issued for that for the same reason, and I had a credit card, that account had been cancelled due to lack of use. I had received no communication from the bank regarding any of this.

He agreed to issue me with a new debit card, together with a new card for the savings account (and PIN as I had long forgotten it), but nothing could be done re the credit card, I would need to apply for a new one!)

I called into the branch a few weeks later, as I had received the new debit card, but nothing in respect of the savings account. At the meeting, I was informed that a letter had been issued in respect of the credit card, as this is required by law. I explained I had no such letter. But no communication regarding the decision to not issue new cards for the 2 account was issued by them as this is not their policy! I inquired re the new card and PIN for the savings, well I was told, they have all been issued, did I have a problem with my postman!!!!!

I explained that I was concerned at the complete lack of service and communication. The money in the current account is my money, but they had basically cut me off from my funds, except by coming into the branch. No comment was made except “not their policy!!”  I then discussed the saving account, again told I must have a problem with my postman, “well” says I, “in that case I had better close the account as someone might have the new card and the new PIN.” The account was closed and cash collected. So I returned to the current account, I would like £600 cash now, oh no, I was told £500 max. That was it for me, I told her to give me £500 and arrange to have the account closed and a cheque for the balance issued to me. She collected the cash, then told me I couldn’t close the account and get a cheque for the balance the same day…………………… so I post dated the required forms for the next day.

Last week I got a page of a statement showing the withdrawal and the current balance, so I got on the phone. I had to try over and over before I managed to get a person to speak to, she was in an English office somewhere or other, I explained- she looked- hesitated then went off to check something, then had to phone head office, then had to phone Edinburgh. Guess what, no post-dated form anywhere, account not closed, nothing had been done, the form must have been lost in the post! Would I pop into town again, to sign forms? I had to count to 10 before saying, no – no way – I have mobility issues and I had no intention of struggling into town yet again, to sort out something that wasn’t my fault. They agreed to accept my phone request, combined with the confirmation from the branch, so will arrange it for me, probably around another 2 weeks.

I wander what would have happened if 1) I had no other funds available to use initially when the card was rejected, and 2) If I was desperate for that cash, if I was relying on it? Tellingly I received no apology about anything in the branch.

Today I went to the optician so they could adjust my specs, they were loose and moving around my face, not good for my eyes I thought, as the lens is set up (they are variofocals)  in line with my eyes, and if the position of the frame is wrong I won’t be seeing properly! They came up with so many excuses that I nearly lost my temper, eventually the optician checked my eyes and confirmed the prescription was ok, but the specs were too wide at the bridge which made them fall down my nose and dig into my cheeks and meant that my eyes were not aligned properly with the  lens. So after an hour or so in there, I chose new frames. I tried to explain that I thought the trained  people who assist you with selecting your new frames actually did more than simply fill in the form, abut apparently not, they will sell you anything! I told them about a previous optician, where I had been refused frames, as they were not right for me would be uncomfortable! and the bridge was too wide!! I was told they were trained to fit specs and make sure the customer was advised and guided to make sure they were happy with their new specs. He said they would take that on board, then the girl who came to help me pick the new frames, just stood saying which she like and which she didn't, I asked her a couple of times re shape, fit, bridge.

Hot tired and needing to get home and the feet up after all that,  but no, mum needed chocolate biscuits, so off we set back into the shopping centre. Back yet again for a bus, not long to wait, this was good. I have to change buses and have my usual route planned out so I have as short a distance as possible to walk. The stop I get off at is after a particularly twisty and bumpy bit of road, so I got my bags on seats, gathered my stick, pressed the buzzer, checked the sign was lit up, and held on for dear life, as I bent to pick up my bags and turned round – what did I see?? My bus stop as we sailed past it!! So I had to get off at the next stop, which meant a wee walk, but with the way I was feeling it could just as well have been a mile.OH met me at the bus top at home to take all the bags, I hobbled across the road. Feet swollen, hands swollen, head thumping and thinking if one more person annoys me today………. So into nightie, make up off, coffee drunk, feeling a little more human, but thank God I am staying in tomorrow!!!

Blog for MOW - Symptoms of AS

I could write down a list, how boring would that be? How long would that be? But that would achieve little. Those of us who have AS and have talked to others will have heard them all anyway.

There is also the fact that there are so many symptoms, and we are all so different, perhaps part of the reason for the problems in diagnosis? The main symptoms in common, I suggest, is the lower back pain, especially in the morning, and the extreme fatigue. Both hugely debilitating in our lives and walking like a pregnant duck while one hand holds the small of your back and the other clutches at the wall, is so not a good look! But after that we are all different, and we are different on a day to day basis, which again, I suggest, is why those closest to us find it hard sometimes to understand. They think they have it all figured out and know how to help them something else happens!

It can attack so many places in our body  anytime, It can be anywhere front joints to eyes, from feet to neck, from hands to heart,and there is no consistency, no real pattern, there are many many parts of our bodies that can be affected and can hurt and ache and scream with the pain, but we have no idea or control of, when, or indeed, if, that will happen. We can go for years with a certain part of our body unaffected - say neck- and then suddenly find we can’t move it because of the muscle spasms that make us gasp, for weeks we can have physiotherapy, or hot/cold treatment, adjust medication, then one day it is gone! It might never return, it might return on a regular basis, it might just move in and stay put.

It is no wander that those close to us can become confused, but doctors should know better they are trained after all, right? The rheumatologists have spent years studying diseases like AS right?

They will understand that we are not being troublesome, or awkward, or confused- it is the nature of the disease- right? Right?

9/11/2001

This was the first year I had been to the USA, and mum and I arrived eventually in Chicago airport. We had to try and follow the signs to the luggage collection point, which we did, then to try and find our way to the appropriate departure area for the flight on  to Nashville. Some how or other my  mum managed to get out of the airport and as we waved to each other through the glass doors, a very pleasant security man (!) came and adjusted the doors so they could be opened to let mum back in, to save her having to walk some distance, he also directed us to the platforms in order to catch the train to our departure gate. While waiting...and waiting, and the crowed growing bigger and bigger and us realising we were not that sure which side we should be on, it was announced there was a problem and the trains weren't running, due a problem on the line!!!!!! They said it wouldn't be long so we decided to wait it out as we had plenty of time for our connection, and it gave us time to figure out which side of the platform etc. After quite a while the train appeared, there wasn't a full service, but we managed to get on and off and get to the departure lounge....where we discovered there was a problem with our plane!!!

We were om a touring holiday of the music of the South, and everyone was meeting in Nashville that evening, however many of us were arriving in the departure area all the time from flights from the UK. We got together, appointed a spokesperson who dealt with the airport rep and eventually a coach arrived to take us to a hotel for the night.Well we thought, what a start! A quiet night was spent in the hotel as we all recovered and had an early night as we were on the 1st flight in the morning.

All went well the next morning, arrived at airport, plane was ok, on time, and we all got seats. We arrived in Nashville and the Tour Escort was waiting for us, she seemed a little put out by our late arrival, which I felt was a little unfair, to say the least. On arrival we were given out room keys and directions, then the rep told us we had an hour to get settled and have the breakfast which was waiting for us, before the coach arrived to take us on the tour of Nashville. You can imagine we all ran around like demented creatures, and arrived at the front door breathless but ready. Then the rep informed us the bus had broken down, and would be an hour late....we were seriously starting to get a little anxious for the holiday by now.

The coach duly arrived and we did the tour of town, into the Country and Western Hall of Fame, saw all the well known places, on arrival back at the hotel our rep told us it was the Grand Ole Oprey that evening, and it was an early start so we had.....20 minutes to get ready and back for the coach. Despite the rush, it was fabulous, really enjoyed it and saw several well kent faces there. On the coach going back we were  hungry as we hadn't eaten since breakfast, and the coach driver said he could drop anyone off if they wanted to. We hopped off at the White Horse Saloon, and had a couple of drinks, something to eat and watched the line dancing. We knew the hotel wasn't far so we wandered out to try to get a cab. Well no one had told us it was the local college  football derby, and the roads were all closed off, it was chaos, we finally saw a cab, and climbed in, the driver said the man we came across asleep in the corner was there first - so we would take him first then he would take us home.We explained the hotel was at the top of the hill just  in front of us, it was one of a popular chain. After a grand tour of downtown Nashville and ending up in the Gay district at a club, we woke the guy up who staggered out the cab and away. While on route to our hotel I looked up to see the signs for Memphis,so asked the driver if we were going in the right direction, I forgot to mention he was from Iran and had poor english, eventually we got back to the hotel, almost via Memphis, but he only charged us $5 as he got the directions wrong and the other passenger gave him much too much.

The next morning was a very early start, we were on our way to Branson Missouri. That was a lovely couple of days, at night we went to Andy Williams Theatre, where he was playing that night with Glenn Campbell . It was terrific, neither were people I would have chosen to go see, but I really enjoyed them. We also had a trip out on a Duck, the vehicle that runs on the ground then right into the water!

The next change of venue was to go to Memphis, we set off on the morning of 9/11. We stopped at a McDonald's for coffee, when a trucker came in and told us the news. There was a stunned silence then our driver rushed in to tell us the 2nd plane had just hit the Twin Towers. What news, we were all shocked to the core. The mood obviously was very somber. We headed off again, and were going to pop into the town in Arkansas where President Clinton was from, but the National Guard had a blockade up, we carried on to Memphis, and we were going to the Peabody Hotel - the one with the ducks, but there had been a gas leak so the whole area was condoned off, so we just went straight to our hotel, where we all stopped in the lounge and just sat and watched the TV to see what was happening, and to get up to date with all that happened during the day. We had a wander down Beale street but no one was in the mood to party! next day we were off to Gracelands for the day, on route, one of my fillings fell out as the rep passed round her boiled sweets. She managed to get an appointment for me at a dentist for the next morning.

The next move was on the train to Lafayette, the coach picked us up when we arrived, it was an interesting journey as the train was full of people trying to make their way home or whatever as there were no planes. We arrived hot and tired, to find the hotel had a lot of other visitors - cockroaches, huge cockroaches!! Had several changes of room before we found a vacant one!!  We went out at night to a restaurant up in the hills  for some great music and dancing, Cajun style!

Next and last stop was to New Orleans. We had a beautiful hotel in a central location, near Canal Street and the French Quarter, we had a wander all through the French quarter to Jackson Square, and over to The Cafe du Monde for coffee and beignets. I loved it apart from the humidity, I was soaked, you would have thought I had had a shower, clothes dripping, hair stuck to scalp. We were out on a boat to see some gators, went out on the river boats for a jazz evening, wonderful, despite all that was going on at that time, and having no idea how we were going to get home.

As it  turned out, mum and I had no problems, our flight was on , though many of our group had to be taken by bus to other airports in order to make connecting flights. The only obvious signs of what had happened were the security men with dogs, and armed police on the the flight.

That is a brief history of my first trip to the USA, so much went wrong on this holiday at all levels, however, we loved seeing the country, loved the South, being on a coach trip meant we were taken to so many places, and told the history of each place we visited. Hearing and seeing all the footage of the Tragic events at the moment caused me to think back about the holiday, and the hours we spent each evening watching what was happening which was seemed so much more frightening being away from home.

It didn't put us off thought, the next year we went on another coach trip following Route 66. This week starts a TV programme by Billy Connolly of his travels along this road, so it will be essential viewing and more memories stirred.

Friday again

Yes It’s Friday again, I don’t get the same excitement I used to get when I worked about Fridays. Probably because the weekend doesn’t mean the same when you aren’t working! Though I still luxuriate in a Monday morning long lie, never get tired of it!!

After a busy week with hospitals and shopping with mother, I was feeling rather unwell and tired - no change that absolutely exhausted! Maybe the blood pressure has something to do with that. This morning I was wakened during he night by Milo to tell me it was raining and he was wet and would I please dry him off so he could snuggle in with me…..so I did, and we did, back to land of nod, the at 6.30 up for cuppa, settled with book and Milo comes back in, again wet, dried him off and we snuggled, for a couple of hours. It was very nice, but boy was I tired, that real eyes keep closing no matter how hard you try to stay awake.

Then suddenly it is after 10, ok more coffee, switch on laptop and say hello to a few people. I remember I had defrosted sausages overnight & bought the veggies to make a casserole, so up I got and got peeling and scraping and chopping, casserole simmering, slow cooker looked out and switched on, casserole decanted. All dishes cleared and washed, then see my bedding lying all dry and folded but very wrinkled, so out comes the ironing board, and see again the untidy cupboard, so everything hauled out and put back in a tidy fashion, a few bits and pieces including 2 old mops and a light shade popped into a pile to go out. Eventually ironing started, and yet again I wander why I insist on getting king size bedding for my double bed….. right  where was I, ironing folded taken through to bedroom to be put away when cooled down, ironing board etc put away, see hoover, ok quick run round flat, then large glass of cold water and a face cloth as by now I am dripping, into eyes everywhere, had a seat and coffee too.

Why I am I sitting here like this when OH is playing on his computer….try to stay calm as thinking again about BP……………..

Found strange bag while in cupboard, and discovered various weights and stretchy band things I had toyed with a few years ago when I lost a lot of weight. So once I cooled/calmed down had a look, must try to organise a programme of exercises. I can’t do much for safety sake with my health issues, but if I can do some upper body strengthening exercises done sitting down, would help to tone up those wings and of course would be using up calories. I have lovely pink weights to put on wrists and purple ones to hold in hand, not too heavy even both together but a useful weight for me, though there are also proper big chunky metal weights, but they can be left for a while yet. Then I found the rubber stretchy band with handles on the end, will need to figure out what to with them!!

I am sitting here now going through my V+ box trying to watch what I can as it is “critical” don’t want to have to clear any films, so about to get a coffee and watch the first of 2 Mount Pleasant’s and see if they appeal to me. I am still in nightie, I went through a wee while ago and cleaned some tatties and chopped them before adding to sausage casserole. OH eats at a different time to me, even though he is on holiday this week he sticks to his usual timetable so his dinner is at around 10-11 at night!! At least when I make something like this in the slow cooker, I can have mine when I want to and its all in the one pot, meat, tatties and veggies, and he can just ladle onto a plate later and microwave.

That’s my ramble for today, I am now on strike from everything for the rest of the day – at least x

Social Outings

Those two words are such a mine field social outings – I have a vague memory of cinema, of theatre, of parties…………

Let’s start at the beginning;

can we plan them? …….only if your friends truly do understand the problems and are prepared for possible last minute cancellations, so that’s when I usually think maybe easier not to bother than risk being a nuisance.

Decision made to make a date to go out, but before we can finalise the arrangements we need to know: how to get there, and home again. So we have to be certain that we can easily get a taxi to get home later, and is a bus possible to get there, or will that need to be a taxi too? All adds to the cost! Also adds to the fatigue if there is much travelling. If someone offers to pick you up, will they realise you need to get in a front seat and have plenty of leg room. Can’t bend and twist to get in back, and if someone in the back they had better have short legs, or maybe just not bother as being such a nuisance.

If like me, you have had to retire from working, then the cost of any outing is an important factor now. Taxis can add a huge amount, cinemas, theatres, are all expensive these days, so an outing which you may not even enjoy can make a considerable dent in your finances, maybe just not bother then.

When we get there, depending on where we are going, are we guaranteed a seat? Is it a seat we will be comfortable to sit in for the evening? Is it one we will be able to get out of with any degree of elegance? You can, of course then be thought of as stand offish if you manage to get a comfy seat and don’t mingle- I used to joke that I needed my throne so everyone could come to me! But then again maybe just not bother instead of being a nuisance.

Assuming we will have a drink, will it be in a glass we can drink from? I have fused neck and little movement so the glass is important – or just give me a straw!!  A champagne flute for example, is a nightmare….. So if it’s a party with everyone standing with a champagne flute and a plate with nibbles. I’d better not go just in case I am a nuisance.

What to wear? I don’t have  many “Dressy” clothes these days as I don’t go out, but depending on what the outing is for will dictate what to wear to be comfy, to allow for sitting for a long time, to allow for some inelegant getting out of chairs etc then again, maybe not bother in case I am a nuisance.

In fact my social life is made up of going to a shopping centre with my mum once or twice a week, depending on how I am and the weather. The shopping centre is all on one level and plenty of seats throughout. Also I can get a trolley as I go in and keep in though all the shops, so nothing to carry.

The other exciting excursions are medical ones, to doctor, to hospitals, and sometimes, like this week, 2 in one day!!

Then, the most regular social life I have is with my twitter and FB friends. I chat with some of them every day. I don’t have to worry about what I look like, what the seating is like, can I drink from the glass. This could be construed as being a bit  lazy, I agree, but as all my friends are working, and all have busy lives of their own, and as I find I am not good in being with a group of people these days, it is a life saver for me. 

I am here for people to visit, but that’s not a very exciting prospect when people have been working hard all week, and people just stop asking me out as I always refuse, however I could go visit them during the day, but they only have daytime at the weekend and they have busy lives. I also don’t have to rush around cleaning and tidying in preparation for visits, not that friends are critical, it’s me that knows what I would like to do, what I can’t do, what I always feel I have to apologise for. Of course if I run around doing what I think I can cope with there is always the chance that I will be so knackered I am not up to having them round.

In my bleakest days I feel all I do is sit, on my own, with cat (S) reading or watching TV, except going to the Gyle (shopping centre) and looking round M&S.  When I am in the house, I look around and see the shabbiness and it is depressing and I know I can’t do it myself, and I have no one to do it for me, if I pay for someone to do it for me, the money will not be made up again anytime soon due to my situation, so can I live with it or not, does it matter or not as rarely does anyone else see it.

 Is this living? Or is this just existing? My answer varies from day to day, right now, as I have been sitting here a while typing so my knuckles have swollen up, my back and neck are aching from sitting in the same position, in honesty I don’t know.

Jackie's Story- updated

Jackie’ Story


When I was a teenager, I begin having lots of aches and pains. The doctors labeled them as, "growing pains". After having constant pain in spine I hopped from doc to doc yet, they could find nothing wrong, and they basically said it was all in my head. Eventually, I was diagnosed with Ankylosing Spondylitis. as my doctor believed 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 1970's. By this time I was married and in my early 20's. One of the things I was told was that my spine was not strong enough to carry children. For the next few years, I was continually taking painkillers and had several stays in hospitals with major flare ups.  The consultant at my rheumatology hospital, The Northern Hospital in Edinburgh (sadly no longer there) reviewed my drugs. He expressed his concern and disgust that a) I had never been referred to the hospital before, and b) that I had never been on anti inflammatory meds.  After the appropriate meds(Naprosyn) were prescribed for use with standard painkillers (co-proxymol), the pain was managed much better, even though I had spent unwanted time in the hospital. I did continue to go there on a regular basis for checkups, until it closed.
The next major event in my life occurred a few years later on New Year’s Eve, I decided I was not going to drink alcohol, as my friend and I were simply going round the neighbors in the wee village we lived. While walking about, I slipped on the ice and was carried home by two drunk men. Fortunately, one was a fireman so knew how to carry me safely.  The next morning I called my doctor, he  insisted I go to the ER hospital.  As it turned out, on falling, I had smashed a vertebrae. It was contained so as there was no danger, I insisted on going home, even though it was very painful. I was informed by my doctor that if I had been drunk, I would probably have been far more relaxed and therefore, would not have done much more damage to my spine.
The next incident, involved my left eye.  My eye looked strange and felt as though there was something in it, after a few days I went to see my doctor.  He found nothing amiss, however two days later, he arrived at my door and insisted I go to the Princess Alexandra Eye Pavilion in Edinburgh, where I was kept for a week.  After reading up about AS, my doctor had  spotted the connection between my eye irritation and the disease, and realised that speed was essential  I had developed iritis and since it had not been treated promptly, it had become worse. I needed injections administered directly into my eyeball, as drops did not work, what happened is that the iris had become stuck and could not dilate, the injection made the iris dilate and kept it dilated while the treatment was carried out. The treatment for iritis is by way of steroid drops and at this stage I needed them every hour, gradually decreased during the week to around 2 a day. Unfortunately I react badly to the steroids so the reduction in the dosage has to be very gradual to prevent pressure building. From then on I had iritis on average 3-4 times at least every year, involving treatment lasting in average 2/3 month. Eventually, both eyes were affected,and on a few occasions both at the same time!  Each time, I detected a flare, I went straight to the eye hospital, as I learnt my lesson from the first incident. Thankfully, I only had two additional hospital stays due to my iritis.  I got to be so good at recognizing the signs of the condition that, I ended up in a few arguments with nursing staff who told me there was no sign of iritis. After I insisted on seeing my doctor, he would confirm that indeed my eye was infected.  In over 30 years, I have only misdiagnosed myself once!  As I am so reactive to the steroid eye drops, the eye presuure has to be monitored carefully, otherwise it is possible the pressure can turn into glaucoma, and damage the optical nerve, and there for the vision.  On one occasion I actually lost my sight completely in one eye for a few hours and was rushed to eye hospital. The doctors were rushing around frantically before giving me an injection, and follow up pills to reduce the pressure in my eye unfortunately the pills also did not agree with me. They actually made the pressure in my eye soar. My eyes are now very sensitive to light and I have lost some peripheral vision in one of my eyes and will most likely need surgery at some stage. That is if I continue with as many flare ups of iritis, but fingers crossed since giving up work they decided to try giving me tiny amounts of the steroid drops to take continually. So far this has worked well, the pressure is a normal level and although there are iritis cells in both eyes, they are not developing, so the maintenance programme is working, I do go to the eye hospital every few months for check ups, so the situation can be monitored.
A few years later, someone pulled away a chair that I was about to sit on it.  I fell hard and the next day I was in great pain.   The doctor insisted it was a flare up of AS, or a bad bruise. (For I was not screaming and crying when I saw him) I told him it wasn't, as I know my body.  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 which turned out to be break number two.  The third time was five years ago as I bent down to pick up a bit fluff on the floor, I heard a crack. Again I was told by my doctor that I had pulled a muscle or torn a ligament. My doctor decided to send me to a physiotherapist. It was an interesting journey there crouched in the back of a taxi, for 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. They made arrangement for an x-ray and insisted that they would need to come to me until they were satisfied with my situation, so I would not need to travel.   As well as confirming another break, they found that I have osteoporosis.  This bone condition, combined with the AS, means I have to be very careful of falling over etc.as my back is very vulnerable – fused bones with osteoporosis.
In December 1999 the rhumatologist decided to operate on my back as I was becoming very badly bent over. As it happens I had been made redundant with the company I worked for had split so it was a convenient time for me. This meant opening me up from shoulder to bottom, breaking the spine in a couple of places, placing metal rods at each side of the spine and inserting hooks to pull everything into alignment. This took place in yet another hospital no longer there, The Princess Margaret Rose Hospital in Edinburgh. The 6-7 hour operation was on a Tuesday and I was put in a plaster body cast on the Friday. (It should have been longer before applying the plaster, but it was coming up to Christmas and the holidays so they hurried the procedure along.  It was the worst thing ever!  If you can imagine, I could only sit up being held by several people, I was in extreme pain and experienced dizziness, plus of course my spine was very delicate. The nurses placed huge amounts padding all around me, it went from under my arms, up to the base of my throat, and then down to my hips.  I was given morphine injections whenever I wanted one. Then there was the scaffolding. I was carried over and laid on this structure, with pipes running under my knees and under arms. There was material banded around my neck pulling my head into place and the same ones on my feet so my back was being pulled as straight and flat as possible. When they finished the plastering, I was untied and carried back to the trolley, and sat up as they had to make sure the plaster wouldn't be too high to choke me, when sitting, or too low to hurt me. Then they laid me down on a trolley and sent me to x-ray to make sure everything was in the right place. I was then put on a morphine drip and was in hospital for a month. There were a few unhappy instances in hospital, for example the morphine drip was fitted incorrectly so the morphine was going into my muscle and not veins. No one would listen to me saying I was getting no relief, at least until my arm started to swell alarmingly – then they apologized!
I had to learn to walk, to get washed without wetting the plaster etc.. After a few weeks had to go back to hospital as there was a black discharge, leaking out the bottom of the back of the plaster which my mum noticed when she was bathing me. It turns out it was an infection in the wound on my back because the plaster went on too early. I was taken into a wee room in the hospital to let a doctor see, and he decided to take the plaster off, they didn’t think ahead, so I had to stay in that same wee room for the week I was kept in. I had to lie flat as I couldn’t move in case I damaged my spine, and each day the wound was cleaned and dressed. There were no further problems, but I had two further changes of plaster, each one a little lighter than the last, over a 10 month period. After all this, I was fitted with leather and metal strap-on body brace.  This switch was bliss, as I could take it off at night and when I bathed.  I needed to wear the brace for a year.
I began to suffer from extreme fatigue and when I saw my doctor, he sent me to the Western General Hospital in Edinburgh for tests. There they carried out my first endoscopy – camera on an endoscope put down the throat to see what is going on in stomach. It was found I had a hiatus hernia and lots of lesions in my stomach due to taking the anti-inflammatory drugs over such a long time. Blood tests also found I have an under-active thyroid.  I now know this is very common, interestingly, the thyroid and AS both have one of the same side effects – extreme fatigue. I describe my continual exhaustion is liken to "Walking through treacle, all the time." This of course meant I had to stop taking the anti-inflammatory drugs and was limited to only basic painkillers. I was also anaemic.
A few years ago I read about a very new injection which had been used for similar conditions, called Enbrel.(one of the new TNF drugs)   I qualified to be given the medication so started with initially twice weekly self injection. The dosage was then doubled, so I could receive it once a week.  However the anemia was becoming a problem and I needed to be rushed several time to the emergency room for blood transfusions. The average blood count is 120-150 for a woman. At one point my count was 50, it was also discovered that my red blood cells were much smaller than normal. My doctor now gets excited of my count is in 3 figures!!
Despite several endoscopes, colonoscopies and a camera pill evaluation, there was no obvious reason for the ongoing severe anemia.  It was determined that it is a common situation with someone with long term chronic disease. As iron was found to help, I now take iron tablets most of the time.
So I take painkillers, injections, thyroid pills, hernia pills, iron pills, calcium pills, osteoporosis pills and eye drops. I get a shopping bag full with each prescription, luckily as I don’t pay for any prescriptions! In Scotland now no one pays, but prior to that  because I have thyroid problems it meant all prescriptions were free.
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).  At times I have the feeling of being such a nuisance when out with friends, for I can't walk far or for long.  I don’t want to go out much as I always need to have a seat before long, so I no longer have a social life. What I do enjoy is having friends over for visits. This too can be difficult, as I worry that I can't manage to have my home as nice as I'd like it to be.  My true friends will understand my limitations.
The AS was also a contributing factor to the breakdown of my marriage. It is a very difficult condition for a patients' partner to understand.  This is even more challenging when ones partner is young and active, as in my case.  Work life was also very difficult due to the constant medical struggles, and after the association I worked for merged with another, they moved offices.  This meant hours of travel each way with 3 changes of buses.  After 3 years of working with the new company, I simply knew I couldn't go on any longer and one day just got up and went home. My HR manager and my doctor were very helpful and guided me through it all.  Thankfully, I was signed off sick for a year which meant I could claim early retirement on health grounds. I remember going to see my doctor with trepidation. After explaining the situation to him, he quietly said, "I can’t believe it has taken you so long to get to this point".    He told me he admired my determination to work, and 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 organized. Again I think I was especially touched at this rare moment for AS patients are so used to people not really getting it.  We feel we have to defend ourselves from being considered lazy. Presently, I don't get the old age pension as I am too young, and I could not have been able to give up work without the support of my partner and 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. What they found was my entire stomach and part of my colon had moved through the hernia into my chest cavity and they were squashing my lungs.  This happened mainly because of my bent back.  The surgeons opened me up hip to hip in order to pull everything back into place and then stitch my stomach to the abdomen wall, so this will not happen again! Unfortunately while in for this procedure, I caught MRSA and a throat infection, so my 2-3 days or maybe 5-6 ended up being over 2 weeks. I was also told they could not find my hernia so did not close it, as they couldn't get me flat enough, so after all that still have a hiatus hernia!.
Another problem which has manifested itself this last year or so has been a twitch at my left eye, which became stronger and eventually moved down my face. This caused my lip to twitch as well and become a bit twisted up, so I look like I might have had a stroke.  I was given Botox, several times but did nothing to really help. The doctor in the Eye Hospital who gives me the Botox, suggested an MRI to see why this was happening. 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 so therefore It was too painful to lay on it.  So I must wait for them to come up with a better way of diagnosing this problem. In the meantime I am continuing with the Botox.
I got back on Enbrel in January 2011, however I have been disappointed with the results.  It's as though it's not as effective as it used to be. I have also noticed my hands are very painful now, with the knuckles swelling, and some morning they are completely numb. The doctors are thinking perhaps it is carpel tunnel.  My knees are also in pain while I am walking. Feet, ankles, and sciatic nerve are all in pain too.  My neck is bent very badly and is fused, so I have to strain to try and look up the whole time I am walking.  This is very uncomfortable, as you can imagine. I have now started on a different injection regime, Humira. So far I am finding no great improvement, but it can take several months to kick in.
These are the "highlights" of the last forty years of my life. There are too many to go over each one of them for there have been many over the years .These days the depression is more disabling, partly because I am just so tired of it all and partly because in all honesty, I don't have much of a life. As I said earlier, no social life in the evenings, too much is involved when planning, transportation, seating etc..  I don't think it's fair to make plans with a friend and then call off at the last minute.  During the day, my friends are all at work and my partner now works nights.  So even when I have visitors over, we have to be very quiet as my partner sleeps during the day.
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 alone.  It also equally affects the mind, family, and friends of those living with the disease. Ones life becomes AS, as it controls every aspect of your person. People treat you differently than those who are healthy and it affects every decision you make.
I would like to make known that having joined various groups pertaining to AS, and by starting my own for group for AS' Peeps, has been the best thing ever. I've met so many fabulous people out there, who are a pleasure to know. These people are from all over the world. All have a generous spirit.  They are the ones who listen to my concerns and support me.  We all exchange ideas, treatments, 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 because they LIVE IT.  I wish social media, would have around in the olden days when I started on this journey, as it would have detracted from the loneliness and isolation.
What a joy there has been in the new friendships made because of this horrible condition! That has been one of the major factors in me getting more involved and active in spreading information about AS. When I hear all the different stories, (and many similar conditions), the huge delay in making a diagnosis, I can understand what these patients are going through.  Some were diagnosed late, which allows the disease to do severe damage before any treatment has been given. This delay also allows the mental wounds to fester.  Those that don't understand have hinted that we are simply seeking attention or have a mental illness. In my case if it was not for my doctor  who doggedly kept sending me to specialist after specialist, until the final x-rays showed a very damaged spine.
I also started doing the chronic illness specific blogs recently - as so many of my friends, people I have known for years, have read my story and told me they had no idea all that was involved, and friends on FB and twitter have read and have thought about their friends and family who have some form of something similar, and it has made them consider their attitude.
I always joke about my hair/make up/jewelry/scarves/handbags etc as my way of trying to grab peoples interest with the top half so they  don't notice the rest so much, but a friend, years ago, told me that she could always tell how I was by my makeup. Being made up and well dressed etc meant I was a little below par, not too much of anything meant I was having a good day, the full works and I was in full hiding behind the mask mode - ie not good at all. I laughed at the time, but I can see now she was quite right.)  I would put these two paragraphs in your biography
Below is taken from the NASS (National Ankylosing Spondylitis Society)

Ankylosing Spondylitis (AS) is a painful, progressive form of inflammatory arthritis.

It mainly affects the spine but can also affect other joints, tendons and ligaments.

Ankylosing means fusing together. Spondylitis means inflammation of the vertebrae. Both words come from the Greek language. Ankylosing Spondylitis describes the condition where some or all of the joints and bones of the spine fuse together.

Entire fusing of the spine is unusual. Many people will only have partial fusion, sometimes limited to the pelvic bones.

Other areas such as the eyes, bowel, lungs and heart can also sometimes be involved with AS.

What happens in AS

Inflammation occurs at the site where certain ligaments or tendons attach to the bone. This area of the body is known as enthesis.

The inflammation is followed by some erosion (wearing away) of the bone at the site of the attachment. This is known as enthesopathy.

As the inflammation subsides, a healing process takes place and new bone develops. Movement becomes restricted where bone replaces the elastic tissue of ligaments or tendons.

Repetition of this inflammatory process leads to further bone formation and the individual bones which make up your backbone (vertebrae) can fuse together.

The pelvis is most commonly affected first. The lower back, chest wall and neck may also become involved at different times.

AS is a very variable condition

Some people with AS have virtually no symptoms whereas others suffer more severely.

AS tends to affect men, women and children in slightly different ways.

Men

The most commonly affected areas in men are the pelvis and spine. Other joints which may be involved are the chest wall, hips, shoulders and feet.

Women

In women the involvement of the spine tends to be less severe. The most commonly affected areas are the pelvis, hips, knees, wrists and ankles.

Everyone is different, and there is no way of knowing how you will progress, so the priority is to get pain management in place that works for you, and try to stay as mobile and upright as possible.
I have now put on too much weight due to going a long time with little exercise. It is difficult to exercise with my breathing problems, recent surgery.. I am hoping to get out and active soon and start a healthy diet. Hopefully this should help me shed some of the excess weight. The only exercise I am allowed to do is to walk, with the fused spine and neck and osteoporosis it is too dangerous, I am not even allowed a massage!
The other main symptom of severe fatigue  can be a real problem as people can look well and so appear to be lazy! One day you can be severe pain, the next fine, but very tired. This again, is what people find hard to understand about AS. One doesn't get ill, get treated and get well.
I think the situations when someone tells us that they understand as they have a pulled muscle in their back, or similar, is both irritating and condescending, but we usually just smile and sympathize.
I hope my story might be of interest, and show that there are so many similar health issues, we are all different, and all have different stories, but so much in common.

Not so bad really.........

After reading another blog today (Tilting at Windmills by Tearose68) I decided it was time I just allowed myself a wee ramble, plus I liked the idea of thinking about and listing “things to be glad about.”

I’ve had a rough couple of days, and plenty of grumbles, and thinking about it, realise I shouldn’t really be moaning!

Starting with the more serious health issues:

I should be glad about the fact I haven’t had a bad flare of my AS for a few years; I have lots of grumbles, but not had the banging your head off the wall to try and knock yourself out to get away from it type of pain for a while; I should be glad that while my eyes are also grumbling all the time, again no major flare ups; I should be glad that I have been lucky enough to have been able to retire early so I escaped more of the purgatory that was my job, and the huge stress of both the job and the travel etc; I should be glad that I am still able to get out and about, however restricted it might be ;and I should be glad that I managed to get my work pensions (though greatly restricted) and DLA, when I hear the problems experienced by so many others.

On a lighter note; 

I am so glad when I sit down with a new book which is the next instalment of a favourite series and you settle down to visit old friends; At the same time a nice big mug of hot coffee; a cat curled by your side, and old soft comfy clothes on, and to finish that vision – rain outside- fire on and all cosy. To appreciate the simple things – changing the bed so all fresh and getting into it that night all freshly showered and fresh nightie; to feel under the weather and your cat to make a fuss of you and snuggle in looking after you; To be feeling down or lonely or just fed up and to come onto Twitter or Facebook and find lots of lovely people who have the time and the interest to chat with you.

I’m in my bed now, not freshly changed though, I have a cat beside me – snoring, I have my book on Kindle ready to read, but I got caught up on line chatting and writing this…….. not so bad really….