Personal accounts of living with AS
This page contains personal accounts of living with AS which have been sent in by NASS members.
This link takes you to a short documentary about a teenager, Rob Garrighy, who lives with ankylosing spondylitis. He talks about how he lives with it, how he coped and his life now.
If you have a story about your AS that you would like to share on our website please contact Sally Dickinson our Information Officer.
If you would like to chat online with other people who have AS do try our forum.
Accidents and AS
I am 61 year old woman and have been living with AS for just over 40 years. While on holiday this summer I had an accident in which I fractured a bone in my neck. I'd like to share the lessons I've learned from the other experience with other NASS members just in case they are useful. When I write them down they seem blindingly obvious but at the time they were not.
I was visiting friends in Brighton when it happened. I was offered a choice of bedrooms and elected to stay in the one with the bed on a mezzanine level. While climbing the open plan staircase to the bed, I lost my balance and fell over the side from a height of about four feet, landing heavily on my bottom. I was carrying a light rucksack, a radio and a glass of water.
Lessons I learnt from the accident
Sometimes it's better to suppress the child in us in the interests of safety. Anyone climbing an open plan staircase with long term AS should be aware of the risk of falling.
Even if you're genetically programmed to carry everything all at once - don't - it might be safer to make several trips.
Diagnosis and treatment after the accident
The local A&E team x-rayed me and diagnosed a hairline fracture in my pelvis. The treatment was rest, painkillers and a Zimmer frame to help me get around. Despite searing pain between my shoulder blades and a neck which was flexed forward, the doctors could find nothing else wrong.
The next day I notified my rheumatology consultant in London but heard nothing back from her. Three visits to the local NHS Walk-in Centre over the next 10 days resulted in more and more pain medication but no reduction in the pain between my shoulders, nor a change in the position of my neck.
My rheumatology consultant contacted me immediately she returned from holidays, recommended a CT scan and offered to facilitate this for me. The CT scan at University College Hospital in London showed an unstable fracture of my C7 vertebra. I had been unaware that I had broken my neck for three whole weeks. Within 36 hours I was in surgery. A titanium cage and plate now hold my spine together around the fracture and my bone is fusing with it. When we spoke later my rheumatologist told me that I was the third AS patient she has come across this year with a serious injury which went undetected for several weeks.
Lessons I learnt about diagnosis and treatment
If you're in pain something is wrong, persist - in retrospect I should have insisted on an x-ray of the top of my spine.
Don't just contact your rheumatology consultant but also make contact with his or her secretary. My consultant told me that her secretary would have referred my email immediately to one of her registrars so that I could have been seen earlier.
There is no clear indication of how long my recovery will take. I have been advised to take it gently, not to set unrealistic personal targets and to listen to my body.
Since then the only real set back has been that I was advised to start taking anti-inflammatory drugs, only to discover they do not work alongside the painkillers I was taking, resulting in a week of nausea, appetite and weight loss and stomach cramps. Rather than face a winter with creaking joints, I asked to see a doctor who specialises in pain relief. She prescribed patches which deal with the pain around my injury and paracetemol which takes the edge off the arthritic pain.
On my to do list I still have to set up some gentle hydrotherapy sessions to strengthen my neck muscles. I also want to talk to a nutritionist about how to put on weight without furring up my arteries.
It's three months since my operation and I'm making progress although it seems slow. I have a gentle daily exercise regime. I go out when invited, usually chaperoned, but occasionally on short bus trips on my own. I do a roaring trade in lunches, teas and suppers courtesy of lots of visitors and on-line grocery deliveries. Next year I hope to be able to start work on a part-time basis.
Lessons I learnt about recovery
Keep a record of the questions you want to ask the doctors, and the ones your family and friends ask that you haven't thought of. Ask them until you get answers but don't be surprised if different branches of medicine have different views.
If there is conflicting advice from doctors and you are in the middle of it, put them in touch with each other so that the advice you get is the best and not a decision you take yourself. Patient choice is all very well but if you're not equipped to make the decision then don't.
Friends and family have good ideas and contacts, pursue them. It was a friend who suggested I talk to the pain relief doctor and whose contact found me a physiotherapist who specialises in neurological conditions, visits once a week and has devised some home exercises for me with my gymnastic ball.
Recovery is not on a straight, upward trajectory. Some days you feel better than others. Live with it. It's normal.
My day with AS
I was misdiagnosed for about 7 years and told there was nothing wrong with me and needed to see a psychologist. I knew my own body and knew that something was wrong with me. I eventually got diagnosed with ankylosing spondylitis in 1980. By this time l was in excruciating pain and unable to move because of the unbearable pain.
After a lot of hydrotherapy, physiotherapy and medications l was starting to manage my ankylosing spondylitis
I was medically retired from local government in 1999 as unfit for work. Since then l have not improved, l have deteriorated. I live a life of pain and discomfort but struggle on the best l can. When you live with a chronic condition and constant pain you will find your own coping skills to manage the best you can. I will give you an example of my daily life living with ankylosing spondylitis.
Starting my day
I sit on the edge of my bed for about 5 to 10 minutes. The first thing I do is reach for my medications and water and take my medications (I always keep them in my bedside cabinet in case I cannot get up because of my pain and mobility).
When I first put any weight onto my feet the pain is unbearable but l know l have start to get mobile because this will also help with the stiffness that l am feeling. I always feel tired before my day starts because fatigue plays a huge part in ankylosing spondylitis along with me also having sleep apnoea.
l stand and do one of my stretches that l have been taught by a physiotherapist. l have now been up at least 30 minutes and am still struggling with my mobility because of pain, stiffness and discomfort, l also feel so tired because I have only managed about 4 hours sleep through the night.
My son calls in on his way to work and has breakfast with me. He makes the breakfast while l am getting showered. He does this because l do not feel safe in the shower in the house alone.
By the time l have had my breakfast and got dressed l need to do some more stretching exercises to loosen my joints up. I then start to do the everyday things that we have to do running a home, make the bed or beds if my son has stayed because l was not having a good day the day before. I have to plan prepare and prioritise what l need to do day by day.
It is now lunch time and the unbearable pain is coming back so more medications are taken before I prepare my lunch. My fatigue is so great that the strength of the medication gives me no choice than to lay down for a short sleep. If I have had to go out I would be longing to get back as l am exhausted.
I have a stair lift indoors as l have already fallen down stairs resulting in my shoulder injury. After doing a few more chores around the house it is coming up to late afternoon and it's time to prepare my evening meal.
Along with pain and discomfort from my ankylosing spondylitis l have the pain from osteoarthritis which mainly affects my hands and left knee. My feet also cause me considerable pain. I also have to contend with pain and unpleasant symptoms of irritable bowel syndrome. I only hope l am not going to get another bout of iritis or plantar fasciitis.
My day is nearly coming to a end and l feel drained, tired, in pain and discomfort and stressed because l know l am not going to get a good night's sleep.
More about me
Yes, l am on anti TNF but l still live with pain everyday as there is no cure at present for ankylosing spondylitis.
I have also had spinal correction surgery (osteotomy) in 2009. This is also not a cure for ankylosing spondylitis but has helped me, along with the many medications I take and the daily exercise regime l do to live with the pain on a daily basis
I had an arthroscopy to my left knee 17 years ago and am considering having another one to delay having to have my left knee replaced.
I also have considerable pain and restricted movement to my left shoulder due to very bad injury from accident on stairs and have got to eventually have a shoulder replacement.
You may be asking yourself why do l not go ahead and have the knee replacement and shoulder replacement done sooner than later? My reasons are that l could end up with less movement in my left arm than l have now and my main reason is that to anaesthetise me comes with risks and complications because of my posture and obstruction to my airways.
It is, perhaps, not surprising that l have been treated for a mental breakdown and depression several times in the past living with my ankylosing spondylitis.
How anti TNF therapy changed my life
I was diagnosed with AS back in 1994. For quite a few years I was treated with various various anti-inflammatory pain killers and then was prescribed arcoxia and sulfasalazine. The arcoxia did help with my back spasms but, due to work commitments, I wasn't constant in taking the sulfasalazine as the need for blood checks would have meant too much time missed off work, which, when working in the private sector is not always acceptable.
In 2010 contacted NASS to discuss the fact that I had lost 11 inches in height. NASS suggested that I ask my GP for a referral to Dr Hunter, a consultant rheumatologist at Gartnaval Hospital in Glasgow.
My GP referred me on and Dr Hunter arranged for blood tests and x-rays to be taken. My inflammatory markers in my blood test results were through the roof and Dr Hunter decided that the arcoxia and sulfasalazine were not working and suggested anti TNF therapy.
Before I was able to start on anti TNF therapy I had to get my chest x-rayed and get my blood tested for TB. Fortunately everything came back negative and I was accepted onto anti TNF therapy.
I was offered the choice of either having my anti TNF therapy as an infusion (drip into the vein) or as a self injection which I would do myself either weekly or fortnightly. The decision was left entirely up to me. On reflection I opted for the infusion (infliximab). This was mainly because I trusted the professionals to look after the medication better than I could and also it was easier to remember when the medication was due.
My first infusion took place on 17 March 2011. For all infusions I attend Gartnavel Hospital in Glasgow, ward 7A to be precise. The nurses are superb and there are numerous people in getting infusions for various ailments. You sit in a very comfortable chair, similar to a dentist's chair. You have your bloods taken for checking at a later time and then you are connected to your infusion drip. I usually have a few bottles of water or juice with me but the nurses do offer to make you a cup of coffee. I also take a newspaper to read along with my Kriss-Kross and Wordsearch puzzle books and generally find it a very most relaxing time.
The ward also has a TV but unfortunately for me, it is mainly women that are in for treatment and they appear to be fans of Jeremy Kyle (ARGHH).
My first infusion lasted 2 hours and was totally and completely painless, then I had to remain in the hospital for a further hour to ensure I didn't have an allergic reaction to the infliximab infusion. Fortunately everything was fine.
My second infusion took place on the 1st April with the next on 28 April.
Following on from the first infusions I initially felt a slight improvement in my posture. However I was told that it can take between 2 and 12 weeks for the full benefits to take effect.
Over the following month I gradually felt an improvement in both my mobility and the stiffness within my neck. Although it wasn't a massive improvement, I was happy to feel any improvement and it gave me the hope and confidence that my condition would not worsen. I felt extremely hopeful I might gradually see further improvements.
The main areas of improvement I felt initially were:
Before when I was out walking I had to stop every 15 metres or so to rest as my legs ached. In the weeks after the first infusions I was able to walk at least double this distance.
Previously when I was walking all I could see was the ground in front of me but, while there wasn't initially been any great improvement in this, there was been some improvement and my range of vision increased by about 2 yards horizontally.
I felt as though this had improved quite well with the movement in both my arms and legs feeling much more loose and free.
A couple of negatives I felt were:
I felt a lot more tired and I was sleeping a lot longer in the mornings and going to bed earlier at night. Previously I tended to stay up late at night, sometimes into the small hours of the morning and I was awake again at 5 or 6 o'clock the following morning. Perhaps this simply meant that the infliximab was allowing me to get a good night's sleep.
After my second infusion I started to get a slight runny nose, but what was irritating about this was a very unpleasant smell in my nose and the same unpleasant taste at the back of my throat.
While the tiredness could be explained as an effect of the infusions, on contacting Gartnavel General Hospital they had never heard of a side effect of a runny nose with a unpleasant smell. As a precaution I contacted my GP who put me on a course of antibiotics in case I had an infection.
On 9 June 2011 I went for my final ‘upload' of Infliximab. This took me to my required levels and I will now attend every 8 weeks for my 'top-up' next visit being in August. On my next visit the infusion will take less than the initial 2 hours as it is believed my body has now accepted the infusion and I will also not have to wait the precautionary 1 hour afterwards in case of allergic reaction..
One thing I did find out on Thursday 9 June was that each infusion is made up specifically based on your previous blood tests and your weight. Although the infusions are carried out under the auspices of Dr Hunter's clinic at Gartnavel Hospital, the actual infusions are prepared at Glasgow Royal Hospital under strict environmental controls and is very expensive, hence one of the reasons that you have to confirm by 11am the day before that you will be attending the clinic, as the infusion has to be used by 6pm on the day of your visit or be destroyed.
WOW!!! What a difference in the past 7 to 10 days. While I initially reported small, insignificant but hopeful differences over the past 10 to 11 weeks, over the past week I feel completely different. The differences are:
My neck movement seems to have improved to a level I never expected. When I walked around before I started on infliximab I couldn't see what I was going properly and was always worried about bumping into people.
During previous infusions of infliximab, when I wanted to check to see how much of the infusion was still left in the bag I would have to lean back, twist my body back and then look up. Even then I couldn't clearly see how much solution was left. During this last infusion I just looked straight up and I could clearly see the bag.
Also, driving in and out to Gartnavel Hospital was significantly easier. I was not forcing my head backwards to be able see where I was going but looking straight ahead. I also had more side movement when checking left and right at junctions. This is a huge relief to me as it was always a big fear of mine that my AS would one day mean I had to stop driving.
Finally it's great to drink to the bottom of a glass or cup again without having to tip a lot of it out as I couldn't bend my neck back to finish it off.
My walking has definitely become less cumbersome and less painful (pain in a stiffness sense of the word). Last weekend I was visiting my mother at hospital. In the past I usually had to stop 3 or 4 times in the journey from the car park to the ward, both to catch my breath and because of the soreness in my legs. On Saturday I noticed that the soreness wasn't really there anymore.
Then, not through being brave, but because only one out of the two lifts was in working order, I decided to walk down the stairs. Unbelievably I had no problem with this. I wasn't moving as fast as everyone else and I was still holding (not gripping as in the past) the handrail for support but I managed to get down from the 4th floor to the ground floor. Since then I have done this every day and my ability to get down the stairs seems to be improving daily.
This is a huge, significant difference for me.
My stamina appears to be greater now than it was before I started on infliximab. When I am walking along, whether just generally or downstairs, I definitely do not get as breathless as before I started. This means a great deal to me as it was sometimes embarrassing having to stop when I was in the middle of a crowd of people. Children in particular, have no patience and just brush you aside (God bless them!).
This might be because my chin is no longer right down in my chest. My improvement in neck movement has helped me hold my head higher, in more than one way.
Since my last infusion, something has changed my life completely. My marriage broke up in 2000, which I took very badly, even writing about now I still get upset. I have never had the courage to even think about a new relationship, mainly due to my AS and the perception of the way I believed I appeared to others. I felt different after my infusions, people told me about the difference they seen in me and also the difference I felt within myself both physically and mentally. I have now met an absolutely beautiful woman and wow my life has come back to me! It does help that she is an angel and is going to help me further. Lena is now encouraging me to attend the NASS group at Gartnavel Hospital, which should help even more.
I now conclude that this treatment has changed me completely and has brought my life back . A big thank you to NASS, Gartnaval Hospital, Dr. Hunter, Ward 7A nurses, my mother and of course Lena. A very special thank you goes to anti TNF therapy and I hope this story gives belief and hope to others as anti TNF has to me.
Please always remember to believe in your treatment but most importantly believe in yourself.
Craig Gunn raised money for NASS in 2011 leading a team of 14 in the notorious 3 Peaks Challenge. This involves climbing the 3 highest mountains in Scotland , England and Wales in 24 hours. He and his team have raised so far over £4,400 for NASS. Here is his story.
Have you ever stepped on a plug. Hurts doesn't it? Well in 2003 as I stepped out of bed that is exactly what I thought I had done. I realised in fact it was my left heel that was giving me a shooting pain up my leg. The usual diagnostic questions came into my mind - and in fact that of my GP at the time. Had I over done it in the gym? Do I have flat feet? Am I wearing the right shoes?
The pain subsided a little with some painkillers but it recurred on and off for months. I also started noticing other pains. Neck, back, knees - I tossed and turned in bed all night and couldn't sit still at work or the sofa. I was feeling very much out of sorts. Having been in the Territorial Army for my university life and being quite active at the weekends I shrugged off the pain - but deep inside I had a feeling something was up and I was burying my head in the sand about it.
One Saturday morning the heel pain came back with vengeance. As I lived near a local hospital I hobbled down there and checked into A&E. I asked if I could have an X-Ray because it felt like a bone fracture. They said the wait would be long. I said, 'Not to worry. It's Saturday. I've got all day.' Luckily for me the A&E doctor on call was a rheumatologist. I had offered an explanation of possible plantar fasciitis to him, but a blood test later showed the shattering news, aged 27 years old - I had ankylosing spondylitis.
At first it hit like a bolt out of the blue - the prospect of fusing bones, a bent back in old age and years of pain. I was really upset and the self-diagnosed internet stuff out there is scary to say the least. At the same time I split from my girlfriend of 4 years and decided to attempt Macchu Picchu in Peru with about 200ml of extra fluid on each of my swollen knees. I continued to hit the bars and clubs of London. I was in denial.
I was prescribed various forms of diclofenac based drugs (NSAIDS) and co-codamal, which I still take daily now. I also have had fluid drained from some joints and had localised steroid jabs and steroids tablets, but I didn't really get on with those. Eventually, with the effects of bone fusion obvious in the toes in my left foot, I began to take methotrexate tablets. The side effects I've had on them methotrexate include ulcers and severe mood swings. But in 2005 I met the woman who would eventually become my wife and, with her support, we have dealt with my moods and the physical results of the drugs have been very positive.
I began running and cycling and pretty much returned to a good level of fitness and exercise from the lowest point of my illness when I needed physical help to get out of bed. Recently I moved onto 15ml weekly Methotrexate injections, which I administer to myself and already the side effects seemed less. Injecting is not as scary as I thought it would be. I know my condition will get worse as I get older and my drugs will continue to be modified but I'm trying to make myself as strong as possible to tackle the worse of it later on in life
My experience with AS has been like a rollercoaster - periods of pain and frustration followed by periods of remission and comfort. Methotrexate has severely affected the possibility of children for me, which has been sad for my family and I but with it has come a greater ability to be active in life and enjoy the things I have.
I still go out clubbing and work as a DJ in London, as well as working in a hectic job at the Daily Mail newspaper. Despite feeling very fatigued from time to time, my mental ability to cope with this condition has improved greatly. My physical fitness means I feel about as robust as I ever have and having led a team of people up one of the most challenging things I have ever done - the 3 Peaks Challenge - I'm already planning the next big trip in 2012. AS isn't going to stop me living my life and my advice to anyone is to be active and stay positive. There are many people going through AS. You're not alone.
How exercise helps my AS
Steve Jones is taking part in the London Triathlon and raising money for NASS.
Monday morning 6am. After a couple of Weetabix my training begins with a 12 mile bike ride to the swimming pool where I will do nearly a mile swim followed by a further 2 mile bike ride to get to work. I have got used to cycling the 26 mile round trip 4 days a week now and so will continue this all the way up to the London Triathlon and beyond.
Cycling is fantastic for people, like me, with AS. Even when I wake up and am hobbling around my flat trying to get ready, my hips feeling stiff, I will always try my very best to cycle in to work as it allows me to move my hips without any jarring or massive amounts of pressure on any of the joints. Even half a mile down the road any stiffness in my hip joint, and normally any pain, has gone away.
Swimming is another great way to exercise without aggravating your joints. It also helps you exercise other joints such as the shoulders and neck which can often stiffen up if you don't keep moving them.
I have had AS for 8 years now and knew that I had the condition for around 2 of those. At the moment I am able to control the symptoms of AS better than at any other stage in the past 8 years. I put a lot of this down to exercise and a healthy diet. I am hoping that I can finish this year's London Triathlon in a very optimistic time of 2 hours 30 minutes which would put me in the top third of competitors, including the likes of Formula One World champion Jenson Button.
I don't consider myself to have been limited massively by my AS. By keeping training I am keeping myself fit and my joints as limber as possible.
Having AS for me means regular exercise and stretching. For some this may sound like a lot of trouble. If you actually enjoy the exercising and set your mind to a fantastic sport like Triathlon this can be very rewarding.
An AS poem
How I wish it never found us
Diagnosis seemed very slow
Doctors and physio's didn't know
I asked so long the hows and whys
Piercing-pain and tears in eyes
Finally I'm told I'm not going mad
But then this 'thing' sounds just as bad
Take these tablets twice a day
It won't be cured, it won't go away.
That was my birthday
I was only thirty
Bamboo spine the doctor said
The words stung and stuck in my head
Life has changed, I understand
But want to stick my head in the sand
Aches and stiffness every day
Sometimes worse, sometimes stays
I do what I can but I'm not the same
I wish I could do what I did, again
Is it AS or is it the pills?
Fog in my head settles and fills
I think the pain sends me around in a hoop
The same thoughts on an endless loop
Cycling fights it and makes me fitter
I'm not weak and I'm not a quitter
But, still, AS gets the better of me
And many suffer more than you can see
I've got a bug which makes AS worse
So I've put some thoughts into verse
It's self indulgent, I'm just feeling flat
AS is not as bad as 'this' or 'that'
But I hope for NASS and hope for others
For my sons- two mischievous brothers
I can only wish they will never know
The pain of AS as they grow
Martin Witney, NASS member
Hip replacement surgery
The week before my hip surgery
I am 46 and have suffered with AS since my teens. It all started at the age of 15 with iritis and I was finally diagnosed when I reached 19.
My hip problems started about 6 years ago after I lost 5 stone in weight. Before this I worked in offices in a desk job. I suffered immensely with my AS and had repeated flare ups. We had staffing problems on the farm and I came to work with my husband - hence the weight lose and healthier lifestyle.
I see my rheumatologist every 6 months and on one of my visits I was experiencing pain in my right thigh. He thought it was due to weight transference from my left hip. I was then sent for an x-ray and the result showed wear and tear in the hip. I did exercises with a physiotherapist and managed to control the pain for 3 years until the pain became worse and it became clear that exercise was no longer helping.
The rheumatologist then referred me to the orthopaedic team at the Sussex Orthopaedic Centre in Haywards Heath and I then began the road towards my hip replacement. Earlier this year in January I had manipulation and a steroid injection into the joint - under general anaesthetic - which could have helped for 8 months. It only helped for a few weeks, so the surgeon said I had to have the replacement.
The hospital specialist did say that my bone density and the condition of my bones were excellent. The mobility of spine is also excellent
I was put on the waiting list in early May 2011 and went in for the op in August 2011. I was having hydrotherapy right up to the operation day as I wanted to strengthen the muscles. I used hydrotherapy as I was finding any exercise painful on dry land
My hip surgery
I had an uncemented (left) hip replacement. This was finally decided after seeing 3 different surgeons! One wanted to do a normal cemented one! The second one was going to do a re-surface due to my age and work load. At my pre-op appointment I was told, the surgeon had gone away and nobody else could do a re-surface! This was one week before my first surgery date.
Surgeon number 3 spoke to me and by this time I was an emotional wreck! He said that he wouldn't do a re-surface because as the procedure has only been going for 10 years, they are finding that women tend to be wearing the new joint out too soon and more research needs to be done. He said an uncemented one would be good for me. This is due to my good bone density and the fact that new bone should attach itself to the new joint.
I had a spinal block and sedation for the operation. That anaesthetist was not sure if my spine would take the spinal block due to the AS but when he could see my mobility range was good, he was happy to do it. I was told that recovery with a spinal block was better than with a general anaesthetic.
The spinal block also helps with pain relief until it wears off. When back on the ward, I could not move my legs for a few hours and when the feeling began to come back I could not lift the operated leg at all.
The physio came round early on day 1 post op and she got me to stand up using a zimmer frame but I felt dizzy and had to wait until the afternoon. They got me to use crutches on day 2 and I had to walk to the door and back. Whilst lying on the bed you have to exercise too. They don't let you home until you can manage the stairs. You have to use a handy grab because you cannot bend below your waist. So dressing is a challenge and you have to wear surgical stockings for 6 weeks, you need help with these!
Weeks 1-4 post hip surgery
I was discharged on day 4 after the operation and the physiotherapist gave me several exercises to do daily but no there was no mention of any follow up appointments with a physiotherapist. The instructions were fairly vague and I was only given a phone number to call if I have any problems.
I have already called several times but it's a different person every time. They just make you feel that you are wasting their time and sometimes don't ring back when they say they will. I feel like I have been rather left alone and worry that I am doing things wrong with my leg!
They didn't actually tell me any weight restrictions for my operated leg. I am using elbow crutches to get around. Indoors I use just one elbow crutch but when I go outdoors I use two. I am only managing short walks outside at the moment.
Obviously my AS doesn't like all the enforced rest and I am finding it hard coping with exercises the physiotherapist gave me. My muscles on the left hip are particularly painful. I lie on the bed when the operated leg swells up. I am also finding that I am tired. I have been instructed to lie on my back at night rather than on my side while the hip heals but this really adds to my woes as my spine hates being in this position.
I am taking co-dydramol, Celebrex and sulfasalazine. I cannot take many anti inflammatory tablets due to stomach bleeds in the past.
As soon as they give me the all clear for hydrotherapy I intend to book myself in for private sessions. The NHS waiting list is too long.
Week 5 post hip surgery
5 weeks in and I don't have any pain in my new hip but the muscle is taking time to heal, if I do too much the wound area (which has healed) aches. Along with the rest of my leg which then needs to be elevated.
I have been feeling much more positive this week, thanks to some advice from Claire Harris, the NASS physiotherapist giving me reassurance about my exercises.
I am managing to walk further this week and am now only using one elbow crutch. However, as I am becoming more mobile I am suffering quite bad back pain and for the first time in a long time I am having problems with my ribs so that breathing hurts. I think it all stems from having the crutch on one side and slightly leaning that way.
I still struggle with the exercise to lift my leg off the bed, I just do little and often with all exercises. It's also hard to remember not to bend down to do things. I must make sure I use the hand grab at all times.
At night I still have to sleep on my back with a pillow between my legs. I was warned I would need to sleep this way until at least my 6 week check up! I do find this hard, as my AS does not like me sleeping in this position and I am having a restless sleep, making me extremely tired for the next day. I'm finding that I need a lie down on the bed twice a day at the moment.
On the bright side, after 4 weeks of feeling alone and depressed, I am now feeling a bit more in control and I will see the surgeon next week.
Week 6 post hip surgery
Well it is now week 6 post op! Had a bit of a set back at the weekend as I attended a family function and was not prepared for certain obstacles! I did take 2 crutches (just in case), bearing in mind this was my first outing since my hip replacement. I arrived in a garden full of people with children running everywhere, slight panic inside!
You just have to think how you are going to manage drink and food - I hate asking for help! I managed to find a seat but it was not the right height so I had to alternate between sitting and standing to stop my hip from aching.
Then it was the good old needing the toilet. The seat was way too low (I use a raised one at home) so trying to get off was a technical manoeuvre but I got there eventually!
I think I managed 2 hours at the party before I had to leave. When I finally got home I was exhausted and my leg was swelling up!
This week I have been for my 6 week post op appointment with the surgeon. He said he was extremely pleased with the way I have healed so far and has said to walk at least a mile a day from now on and keep on with the exercises. He has booked me in for hydrotherapy because this helps with my AS as well. In addition he has given me the go ahead to drive my 4 x 4 truck but did say to have someone with me, just to make sure I feel safe etc.
I must admit that this has been the best week so far in terms of pain levels. I have taken Claire, the NASS physiotherapists advice and have not been sitting in my chair for long periods and I've have found my AS to be a bit better this week. I am now positive for the coming weeks. The surgeon did say that for up to 3 months I will have progress but also some setbacks. He said not to take the setbacks personally and rest if they happen! I have major muscles to rebuild. Still no bending beyond waist level and only light housework!
I have found this week that both my legs have been swelling with the heat, so I have to lie on the bed for an hour to rest them. I am not allowed to sit in the chair and elevate them.
I hope the next week will be just as positive.
If you need joint replacement surgery then do read surgery for AS on the website.
Being diagnosed with AS at 30 years old was scary for me, especially as I had no real clue what AS was. Since then I have learnt so much about it and even more since I became pregnant. With so many concerns and worries, I wanted to feel as confident as possible when speaking with any medical professionals about my options and I feel that arming myself with as much knowledge as possible helped me along the way.
I was diagnosed with AS in early 2010 after I had been suffering with increasing hip and spinal pain. Married in October 2010, I fell pregnant soon after. We planned to have a baby and although we were worried I have always wanted children so nothing was going to stop me, not even AS!
Knowing I would not be able to take pain relief whilst carrying our child, I turned to exercise. I took up pregnancy yoga very quickly and even did normal yoga classes. It's fine as long as the teacher knows they can keep an eye on you and give different poses suitable for pregnancy. I would always walk a lot before my pregnancy and so kept this up too and at home I would stretch as often as I could; in the shower; in bed, on the sofa; on the floor and in the bath. Baths were my salvation, a long soak worked miracles!
As the months went by and I got bigger, I did find it more difficult getting out of bed. I would wake in such pain and very, very stiff. Then I wasn't sleeping properly because I was worrying about waking up to being so painfully stiff! Eventually every time I woke in the night, I would get up and stretch and practice yoga poses. So, whether I was wide awake or half asleep, I would make sure I got up and I stretched for at least 10 minutes and then I'd go back to sleep. It really helped!
Dealing with AS in pregnancy is one thing; giving birth is another as any mum will tell you. I had an extra visit to the anaesthetist to discuss labour pain relief. The anaesthetist advised that even with AS I could have anything I wanted, unless there was a problem putting a needle into the spine, which they have to when giving an epidural.
When the big day arrived, we were like all new parents - excited, scared, nervous and anxious that everything was going to be OK. My main advice to anyone is not to worry and not have too many expectations. Take each day as it comes and when the time comes don't feel disappointed if you have to change your birth plan.
I wanted a water birth as I felt this would suit my AS best but in the end I needed an epidural and was so pleased when I had one! I was told by our midwives that giving birth was not going to be a problem at all as my pushing was really good and my hips weren't causing any difficulties. The only difficulty was that our baby decided to put her little hand on her little head and so she was delivered by forceps, nothing at all to do with my AS.
So, our first daughter, Lana Rose was born at 4.53pm on 29 June 2011 weighing 7lb 10oz, she is amazing and we can't wait to have another baby, hopefully soon! Having AS has not put me off growing our family and it shouldn't put anyone else off either. Good luck to any mums to be or anyone thinking of having a baby, be positive and remember you're not alone!
I have said to Sally, the Information Officer, that I'm happy for other women who are either pregnant or thinking about starting a family to get in touch. If you would like to get in contact then either email Sally give her a call and she will pass on my email.