Tanya de Lacy
It’s very hard to know where it started really, like so many other people that have been brave enough to tell their story. Until a year ago I had never heard of AS, I had no clue what it was or how to say it!
Boy I have learnt a lot since then! But to start at the beginning – well as far back as I can. When I was a very little girl I remember having terrible pains in my legs at night – ‘growing pains’ a real aching at night which would keep me awake, I must have been about 7 or 8 and this continued right up to when I was in my teens, my mum even took me to the doctor’s about it at one point, to which we were told it’s a normal part of growing up and to give me a child painkiller. By the time I was 14 I had started my periods and was literally collapsing every month and being sent home from school, and the back problems began at this time. I remember sitting in my science class at 15/16, on higher lab stools in agony from lower back pain and my tailbone hurting so much that I couldn’t sit straight, this must have gone on until my mid-twenties.
But going back slightly, at 16 I had been put on a mini pill to help control and regulate my periods, I had begun to get a lot of headaches and feel constantly tired, but as I was getting ready to take my exams I didn’t really take too much notice and had my eyes tested, hopefully my new reading glasses would take the strain off my eyes and the headaches would calm down. One morning I woke up very early and tried to get out of bed, only to find that I couldn’t move my left side, I couldn’t shout to my parents because I could open my mouth to speak. I was 16 years old and I had had a stroke. Eventually my little sister had wandered in to see if I was awake and raised the alarm. Fortunately because of my age and the fact that the stroke was fairly mild, I started to recover fairly quickly. I spent a couple of days in intensive care being monitored around the clock and then put onto a geriatric stroke ward which wasn’t much fun for a young girl – but the nurses were so lovely and managed to get me a bed right next to the TV room and allowed my friends (who were all skipping school to be with me!) and I to chat and be kids and not disturb anyone else! After 3 weeks I was well enough to go home, I had regained the use of my arm and hand and my speech was almost back to normal, just had my leg to contend with – that would just take a bit longer and need more physiotherapy. Eventually 5-6 months down the line I was so much better, just a little weakness in that side. So life continued, I finished school, went to College, tried my hand at a couple of different jobs, still having the back aches and pains, and then met who I thought was Mr. Right! I had my oldest daughter at 21 and my oldest son at 24. Sailed through the first pregnancy, the second pregnancy however wasn’t so great! Sailed through until 32 weeks and suddenly with no warning went into labour! I ended up having an emergency C-section and my little tiny boy was thankfully strong and in good shape – he spent nearly 4 weeks in the Special Care Baby Unit before he was allowed home. So here we are, my little family! I even got married! In the meantime I start suffering from quite bad endometriosis, bad enough for it to start trying to pop through my C-section scar and form a massive painful lump, which I had removed. Two years later I suffered a miscarriage at 11 weeks and had to have the little one removed from me. Another angel in heaven. After that – no more endometriosis. No more marriage either! My husband had turned into a drunk, abusive and violent man for want of a better description! And so we were divorced. It was hard work starting out on my own with 2 small children, I moved into a little flat and found a good job during school hours – A new beginning and happier times, except the nagging and worsening back pains. I had seen my doctor several times about the same issues – back pains, and constant tiredness. He told me I had a curve in my spine and that was the cause of my back pain and my tail bone may have be displaced slightly during pregnancy and childbirth. Ok – I take what he says – he is a doctor!! I put my tiredness down to being a single parent and working in a quite demanding job with a local Charity that looked after the interests of families with young children – families just like me! I loved my work and spent 8 very happy years there. For the two years I spend on my own with my children I was happy. I had a good job, family and friends a little place to live, my own car and life was just ticking along. I had gone through a lot of heartache along the way with my ex-husband, the divorce and Court hearing over access to the children, but generally I was doing ok. Or so I thought! Eventually I found out that my ex-husband had been having an affair with someone who was very close to me, for a very long time and my life shattered into pieces. I spent a few weeks in such a state that singing out loud to myself was the only way I could take my mind off all the images in my head. It was the one and only time I can honestly say I didn’t want to be here in this world anymore. Life was just too hard for me. Of course I got over that feeling – my growing babies needed their mummy and I could never leave them – ever. So once again I picked myself back up from off the floor and brushed myself down, and carried on with my life.
I met my partner Paul in 2001 at a mutual friend’s Wedding, it was very funny when I think back on it now because he had said to me ‘don’t I know you from somewhere?’ What a chat up line!!! But he was right, we had actually known each other vaguely some years before and had other mutual friends! We got on really well and he loved my children immediately! After a year of dating we decided to move in together, I was moved to a little 3 bedroom house in a nice area – another new beginning! Paul didn’t have any children of his own and was desperate for us to have one of our own and so after 5 years together I became pregnant with our little boy.
The pregnancy was a rough one with me being very sick and developing SPD at 16 weeks-it was agony! Even just sitting down my pelvis would grind! I ended up having to walk with crutches for the last 8 weeks before he was born! At last my little son arrived a healthy 6lbs 1oz and we were over the moon! Eventually the SPD subsided, but was replaced by swollen ankles, foot, heel and knee pain – I remember wondering how on earth could my feet hurt so much when I’ve only just got out of bed! Fortunately the foot pain and swollen ankles only lasted a few months and then got much better – again I had put that down to only just having a baby, hormones and it was a very hot summer that year! Thing were pretty much the same, my little lad was growing quickly – it was almost like being a first time mum again after a 9 year gap, and I was loving every minute of it – but my back, knees and heels were still nagging most days, and shouting loudly on occasions! I was always very careful not to do things that would cause my back to lock up with a small child to look after! After a particularly nasty episode of back pain that went on for weeks and I could hardly walk or straighten up, I was back at the doctor’s in tears, she was very nice and kind and gave me Diazapam and Co-codamol for the pain which helped a bit and she referred me to a ‘Back Clinic’ which I waited over 6 months for an appointment! Finally the appointment came through and I went (even though my back was a little better) and was seen by a Chiropractor. She examined me and said it was just basic wear and tear-nothing that could be done and she could refer me to a Pain Management Workshop to learn how to deal with painful episodes – I never heard from them or was given an appointment! This was the Summer of 2009, I was also scheduled to have laser treatment on my cervix for stage 3 cell changes. A few weeks after seeing the Chiro, I started to get a massive pain in my right leg from my lower back all the way down to my foot – it was so painful I couldn’t even sit comfortably at times, the dreaded sciatica had struck! Back to the doctors, more pain killers, muscle relaxants and ibuprofen! I had my laser treatment done and after recovering from that and an awful infection due to the extensive laser treatment a month later my grandmother passed away and I found out I was pregnant again!! A bit of a shock to say the least!
So baby no.4 was on its way and I was about to face one of the hardest times of my life (apart from my divorce!). The pregnancy was a nightmare from start to finish, I nearly lost her at 11 weeks, I was rushed into hospital on Christmas eve with severe bleeding, I honestly though she had gone – they gave me a scan and there she was wiggling away!!! I couldn’t believe it! I knew then that she was a little fighter and what a fighter she was! The next few months I was in and out of hospital having checks and scans, there was a large blood clot at the bottom of my womb that she was sitting on top of, all the bleeding at Christmas had been due to a tear in the placenta. The consultants were very kind and did warn me that I could loose her if the placenta started to fail, so I was pretty terrified! In the meantime I developed SPD again, not as bad as before, so I was sent to physio who were reluctant to do anything with me as it was a high risk pregnancy.
Well she made it to 28 weeks and I went into labour very suddenly and very quickly! Fortunately they had given me steroids to mature her lungs and she was born breech on St. George’s Day, a tiny 2lbs 11ozs – fragile but fairly healthy all things considered! She was rushed down to the Special Care Baby Unit (SCBU) where she spent the next 96 days. Fortunately the labour was very controlled and I was able to have her normally without a C-sect, so I recovered fairly quickly which is just as well because life got extremely busy from then on! I was visiting our little Annalise in the mornings and evenings, expressing milk for her, and trying to look after my other 3 children and run the house – it was exhausting! I seemed to get sick, one thing after another which didn’t help matters! After 3 weeks they took Annie off CPAP and she was strong enough to breathe completely by herself and she was putting on weight steadily, it seemed to be going well. The doctors had warned me that she had a heart murmur but that it was common from prem babies and they were hopeful that the valve would close on its own with the help of drugs, it didn’t seem to be causing her any problems so they waited for a few weeks. Well you know what’s coming don’t you – yes the valve didn’t close and started causing her major problems as the blood flow was not reaching her bowel and tummy properly, she contracted a very nasty bowel infection called NEC and was bombarded with several antibiotics and rushed to intensive care, the infection was causing her tummy to swell which affected her breathing and oxygen levels, the nurses and doctors were fantastic, absolutely on the ball with it all. She slowly got better and seemed to perk up for a week or so, then the infection struck again, now she was critically ill. It was too much for the local hospital to deal with and so she was immediately transferred to Great Ormond Street Children’s hospital in London, one of the leading children’s hospitals in the country. I went to pieces! I was so frightened and I had to leave my other children with my parents so that I could stay in London with Annie! On top of all this my back and the sciatica was hell, and of course the stress wasn’t helping matters. So my poor baby had a heart op and a bowel op that saved her life, she was then transferred back to the local hospital after two weeks. Finally after 14 weeks in hospital she came home – the most amazing day!!!
That’s when this condition started to hit me harder, I started to get fevers for no reason – they would last for a couple of days and then disappear, I started to get very stiff in the mornings and my back was getting really bad again, the sciatica that I had had for 15 months had now got much better, but other problems were coming out, stiff and painful shoulders and ribs in particular. Eventually I went to a new doctor in August 2011, he sent me for lots of X-rays and blood tests, then I had an mri scan on the lumber area and discovered I have 3 slipped discs and 2 areas of scoliosis. Yes it would explain some of the back pain, but not the swelling of my ankles and hands, heel pain and morning stiffness! Finally I was referred to a Rheumatologist in January. I have had more X-rays, 2 more mri scans on my SI joints and more blood tests, I am currently taking Lansoprazole to protect my tummy from the NSAID’s that I have to take (Lodine SR) and all the painkillers I have to take (Co-codamol and Tramadol) to be able to move and look after my children, I have also developed Raynauld’s during this time too! I get all my results on 25th. June and then I hope I will be out of limbo, have a name for my pain, and to be able to move on with my life.
I have met some absolutely wonderful friends through ‘The Faces of Ankylosing Spondylitis’, The ASAP groups and ‘I have Ankylosing Spondylitis’ group, I have learnt so much and made lifelong friends. I know with a little bit of help and support we can live with this awful condition and stand tall together!
Many thanks to Cookie, Kelly and Gillian for their great support and tireless work to make our lives better – you are very special people! This is my life – thank you for taking the time to read it and get to know me!
London England United Kingdom