I wrote this piece early in 2012. Now, in mid-2013, it doesn’t paint an entirely accurate picture of my life as it is, in terms of my health, my relationship and my children. But still, the majority of the story will never change, and it is my intention to update it with the next “chapter” soon.
My story starts as a very young child. For as long as I can remember, I’ve been ill every winter with coughs, colds and chest infections. As my childhood went on and I began to get older, my chest infections increased in frequency and severity, and by the time I was at secondary school I was missing significantly more school than others my age. By the time I was about 14 I had a permanent chesty cough. I have vivid memories of coughing my way through lessons, with classmates ribbing me about staying quiet long enough for them to hear the teacher. I became breathless and wheezy very easily, so my Mum would write notes for my PE teachers, excusing me from Cross Country running. I was permanently tired and slept a lot even by teenager standards. At the weekends I would sleep for up to 16 hours straight.
I was also a completely normal teenager. I went to parties with my friends, I had boyfriends, I performed in school plays and I enjoyed making my classmates laugh more than I enjoyed working hard! But we knew something wasn’t right and my parents would take me to doctor after doctor, consultant after consultant, each time being told they knew exactly why I coughed so much and felt so ill, and each time being given a different diagnosis. I had bronchitis, I had asthma, I had allergies … and after each visit I was sent away with the prescription that would improve my life. Except it never did. And when I went back to the doctors, telling them my asthma pumps weren’t making a difference, they just increased the dosage.
When I was 17 I went on holiday without my parents for the first time – I went with six girls from school to Mallorca. I loved it, but found it hard to keep up with the long hours of partying and not much sleep, and every night I was the party pooper, begging the other girls to come back to the hotel with me as I was so tired I could barely stand. Halfway through the holiday we all started getting ill, with high temperatures, diarrhoea and vomiting. For the other girls, they were fine after a few days, but my illness continued for the rest of the holiday. I vomited my way through the entire flight home, and after collapsing gratefully into my parents’ arms at Heathrow airport I got better at home. But my cough stepped up a gear, and I was now coughing up sputum every day.
Despite my deteriorating health, I managed to achieve reasonable grades in my A-Levels and went to Bradford University to read Community Studies with Women’s Studies. I had deliberately gone as far from home as possible, so that I had to learn to be independent and look after myself. I loved university life and the new friendships I was making – though no-one wanted the room next to mine in halls of residence as my cough was so loud it would keep them awake at night. I would go to bed with a bin and a box of tissues next to my bed, and would cough up sputum throughout the night. During the day I would drag myself out of bed to go to lectures, I had two part-time jobs, and I kept on top of my assignments. I was completely exhausted, yet still having a great time.
Halfway through my third and final year I fell ill. My cough was the worst it had ever been, I was constantly short of breath, my temperature was sky high, and I couldn’t stop vomiting. I went to the GP who prescribed me a standard course of amoxicillin and sent me away. I retired to my bed where I stayed for a few days before calling my Mum and asking her to drive over 200 miles to come and look after me. While she was with me, I happened to pick up her newspaper one day. There was an article describing a prevalent strain of pneumonia and I recognised all my symptoms. Mum immediately drove me home to Essex where my parents decided not to waste time with any more GPs and instead paid for me to see a private doctor. He agreed that I had indeed been suffering from a very serious case of pneumonia and said that when I’d seen my university GP I should have been hospitalised immediately. Instead, he said, I’d been through the worst of it in my room in halls of residence, and that I was lucky to still be alive. He went on to say that whilst I was still very ill, I was no longer in danger and that my parents were able to care for me now. The GP also discovered that I was seriously anaemic.
For a few months I saw the private GP twice a week, where he would monitor my progress. I had regular chest x-rays and I was on a high dose of antibiotics and iron tablets. I consider myself very fortunate that my parents were able to afford the huge cost of the x-rays and frequent trips to the GP, and slowly I began to feel a little better.
I was determined that I was not going to allow over two years of study to be wasted, and so I continued to study at home and submit my assignments to my tutors. I completed my dissertation and filled in a form saying I had mitigating circumstances affecting my studies.
Once I’d submitted all my assignments and completed my studies I began applying for jobs. I was delighted when I was offered a position in an organisation that provided play schemes for children with special needs. My role was to write behaviour plans for the children and train the volunteers working with them – in short it was my dream job and I was delighted to be working. Things went reasonably well for a while, and on the day that the results for my degree were due I phoned the course tutor who had been so supportive over the past few months. She told me with delight that I had achieved First Class Honours. I was incredibly proud to have achieved this despite everything I’d gone through in my final year.
Unfortunately I began to find working life very tough. I was permanently exhausted and coughing violently throughout the day. The small improvements I’d seen in my health disappeared again, and I was back to feeling permanently awful. After four months in my dream job, I was forced to admit I just couldn’t cope and had to resign. By this point I had bought a one-bedroomed flat, and my parents were generous enough to take over paying my mortgage for me. I filled in the forms for Income Support and began to sink into depression.
By this time I was still seeing the private GP regularly and he was concerned that I was not making the progress I should, and so he referred me to a private chest physician in Harley Street. After looking at my chest x-rays and CT scans, the chest physician told me I had a condition called bronchiectasis. He explained that this is permanent damage to my lungs, caused by twenty years of chest infections and pneumonias. He told me that with bronchiectasis the airways of the lungs become abnormally widened, leading to a build-up of excess mucus, which can in turn make the lungs more vulnerable to infection; and that I would need to have regular physiotherapy on my chest to help me clear the excess mucus.
The chest physician also knew that bronchiectasis is often seen in people with disorders of the immune system, and therefore recommended to the GP that he order some blood tests to check my levels of immunoglobulin. Within a few days the results were back, and although the GP did not discuss them with me, he arranged for me to see an immunologist at Barts as a matter of urgency.
Until then I had not thought much about the diagnosis the chest physician had given me, or any more diagnoses that were to come. I was so used to different “experts” giving their misguided opinions about what was wrong with me that I had no reason to think this was any different. But as I sat in the waiting room at Barts Hospital a chill began to creep across me.
On every wall around me were posters about HIV, about AIDS, about trials for new HIV treatments, about living “positively”. I remember thinking “Oh my God. I’ve got HIV.” By the time I was called in to see the immunologist I was so frightened I couldn’t see straight. I sat next to him, bracing myself for what I knew I would hear. And then he told me that I had a condition called Common Variable Immune Deficiency; a form of Primary Immune Deficiency.
It took the rest of the appointment for me to process the fact that I hadn’t, as far as I was concerned, been given the death sentence that I had been expecting – and I literally did not hear another word that was said to me throughout the entire consultation. Luckily I had taken my aunt to the immunology clinic with me, who had made notes and asked questions, and on the Tube journey home I gradually began to absorb what we had been told. And finally it all made sense. Everything I had been through could be explained by this diagnosis, and I knew it was the right one. Finally, at the age of 21, I knew what was wrong with me.
Over the next few days I read all the literature I’d been given and started the long process of understanding my condition. Primary Immune Deficiencies are a group of disorders in which parts of the body’s immune system are missing or not functioning properly. Primary Immune Deficiencies are rare genetic disorders, and my particular deficiency is called Common Variable Immune Deficiency (CVID). My CVID means that I do not naturally produce antibodies (except in tiny amounts) so I have no natural defence against common bacterial and viral infections. The treatment for my condition was to be infusions of human immunoglobulin (antibodies) – in other words, if I wasn’t making my own antibodies I’d use other people’s instead. I’d have to receive the immunoglobulin via a drip and would have to do this every three weeks. It was a daunting prospect.
My Mum came with me to the clinic for my first treatment, and tried to put on a brave face as she watched her baby being connected up to a drip. As the hours wore on I began to feel hot and cold, and developed a terrible headache. The nurse told me this was normal and gave me paracetamol. My arm became very sore at the site of the needle and the nurse gave me a heat pad to hold on it. I grew very tired and lay on my hospital bed sleeping sporadically. Yet despite all of this, a big part of me was finding the experience comforting and validating. I had spent the best part of ten years trying to be taken seriously by doctors, and now here I was in the famous Barts Hospital with a team of nurses caring for me, a consultant who came to visit me at my hospital bed, and a human blood product dripping into my arm. It didn’t get much more serious than that, did it? I felt like opening the window and shouting “You see? I TOLD you I was ill!” When I eventually got home that evening I was completely exhausted and fell asleep immediately. When I woke up the next morning it felt as though I had flu, and I continued to feel like this for the next two days, before the feeling eventually went.
This whole cycle repeated every three weeks. As infusion day came around I dreaded it and looked forward to it in equal measure. The experience was miserable, painful and made me feel ill. But it also meant that every three weeks a whole day was dedicated to acknowledging that I was ill – something I had longed for. I didn’t realise then how very ill I was. I still coughed up sputum all day and night; I had gastrointestinal problems and permanent diarrhoea; my joints had all become incredibly painful. But for me this was simply normality. This was my life.
After six months I was still not feeling any benefit from the infusions, and by now the novelty of the hospital setting was beginning to wear off. I had stopped enjoying my infusion days and now found them utterly miserable.
One of the worst parts of the experience was the difficulty the nurses would have in setting up my drip in the first place. I discovered that I have terrible veins – narrow and deep. So every three weeks, before I’d even started receiving the drug that I knew would make me feel awful, I had to endure needle stick after needle stick. Most times the nurses would give up after five or six attempts and call a doctor. It was not unusual for it to take 11 or 12 attempts to get the needle sited in a vein. In desperation the nurses even talked about using the veins in my foot. It was also fairly common for the needle to move during the infusion, and for the whole process to have to begin again. With every month that went by, my veins seemed to become more and more uncooperative and I wondered many times whether it was worth going through a regular experience that I had started to find deeply distressing. The realisation that this was going to happen for the rest of my life was more than I felt I could cope with.
I explained to the nurse at Barts how low I was feeling and I was put on antidepressants and referred for therapy. The antidepressants were simply added to the long list of drugs I would take every day: antibiotics, vitamins, iron tablets, tablets for nausea, tablets for dizziness, tablets for diarrhoea, tablets for joint pain … at one point I counted over 30 tablets a day. I spent most of my days alone in my flat. I’d sleep until lunch time, then lay on the sofa, turn the TV on and go back to sleep. I was surviving on benefits and could not imagine a future worth living.
Then one day, I woke up and felt different. I didn’t want to pull the duvet over my head and go back to sleep. And then it dawned on me … this must be what it felt like not to be ill! It had taken 22 years but finally I knew what everyone else felt like every day – and at last I realised how ill I had been for such a long time.
It was around this time that my nurse began talking to me about home therapy. She explained that I could administer my own infusions at home. It sounded wonderful – infusions from the comfort of my own sofa rather than taking the Tube and sitting on a hospital bed. The nurse said she could start teaching me how to do it, and I jumped at the chance. I quickly learned how to set up my IV. I learned about hygiene and safety, and what to do if something went wrong. Everything was ready for me to start home therapy except for one problem – if experienced nurses couldn’t get needles into my veins, what chance did I have? I was determined to do it though, and was convinced that I’d be able to do it eventually.
I learned on the hospital’s rubber practise arm. My nurse allowed me to practise on her, as did my Mum. I stuck needles into anything I could get my hands on – rolls of kitchen towel, oranges … but no matter how hard I tried I couldn’t not get a needle sited in my own vein. I would grow frustrated each week when my nurse gently explained that she would allow me to try once more on myself before she would take over. Each time I would have to tearfully admit defeat and hand my bruised and bleeding arms over to her.
My nurse had started telling me about subcutaneous infusions as a possible alternative for me. She explained that there was no need to find a vein as the needles simply went into fatty tissue such as in the stomach or thighs. It sounded great but because the body could not absorb such high volumes of immunoglobulin through this method it had to be done every week instead of every three weeks. I told her I simply could not contemplate the idea of putting myself through the ordeal of an infusion every week, and despite all her attempts to persuade me I refused to discuss it. I stubbornly persevered with the impossible task of learning to set up my own IV drip.
Then one day, she suggested I simply started subcutaneous infusions on a trial basis. She promised that if I tried it for three months, I could go back to intravenous infusions if I wanted to. I was so desperate to stop the frequent hospital visits and start infusing at home, I agreed.
So I went back the following week for my first subcutaneous infusion. As instructed, I had put EMLA cream on my stomach and thighs before I left home, so that they would be numb by the time I reached Barts. The nurse drew up the clear liquid from the tiny bottles into syringes which she then put into a pump that she explained would slowly depress the syringe over a few hours. Then she took four tiny butterfly needles that were connected to the syringe and put two into my stomach and two into my thigh. I hardly felt a thing.
The sensation of the immunoglobulin being pumped under my skin was an odd one to say the least. It felt hot and itchy, and as the liquid built up under my skin a raised red patch grew around the site of the needles. It was uncomfortable but not painful, and at the end of the infusion I felt fine. This was a revelation after a year of intravenous infusions that made me feel simply awful. By the time I got home I had a slight headache so I took two paracetamol, and when I woke in the morning, instead of feeling like I had flu, I felt fine and ready to face the day. It didn’t take long for me to realise that going through this every week was infinitely preferable to what I had been dealing with every three weeks for the past year.
It only took a couple of weeks for the nurse to be happy that I knew what I was doing, and then I was ready for my first home infusion. My immunoglobulin was to be delivered to me every four weeks along with all the needles, syringes and other paraphernalia that I needed. I remember thinking how odd it was to have a bathroom full of all this medical equipment, and it seemed very strange sitting at my dining table with my Mum, setting up my infusion the way we’d practised in hospital. But it all went smoothly, and as I relaxed in the living room with my infusion while Mum went into the kitchen to make me a cup of tea, I knew without a shadow of a doubt that I would never go back to intravenous infusions.
After some months on subcutaneous immunoglobulin it became apparent that, not only were my infusions infinitely more bearable, but my health was improving significantly. My regular blood tests showed that my immunoglobulin levels were stable rather than having the “peaks” and “troughs” that are found with intravenous infusions. Whilst I continued to suffer from chest infections, they were beginning to become less frequent, and responding better to antibiotics. I still wasn’t well enough to consider a full time job, but I had started teaching on Sunday mornings at my synagogue’s religion school, and then took on a part-time voluntary job as a consumer advisor for the Citizens Advice Bureau.
For a couple of years I continued like this. Things were far from perfect, but they were much, much better. I started to think about the possibility of a full-time paid job, but my chest infections were still too frequent to make this feasible. But they continued to occur less and less often, and eventually the time came when I realised I’d gone a year without a chest infection. I decided I was finally ready to think about a career, and so in 2005, at the age of 27, I started training to be a teacher.
Once my training was complete I was offered a job teaching in a secondary school in a challenging inner London borough and I discovered the joy of earning a living. I loved the fact that I was working with young people every day, and I loved everything I was learning through my work. Things were going so well for me that I enrolled in an MA module which I studied part time in my first year of teaching. In that first year I also bought a house, which I absolutely loved, and finally had the money and energy to make the beautiful home I had always wanted. I became good friends with a group of teachers from the school, and we would go out regularly socialising. And finally I was keeping up with everyone else on a night out!
I even went to Thailand for a month with two of my new work friends. I experienced things I’d never imagined I’d be able to do, and even had a chance to teach in a school there. And I was able to do this by taking all my infusion equipment with me, and infusing under a banana tree.
At the beginning of 2007 I joined an online dating website and met M. We hit it off immediately – so much so that six weeks after our first date he moved in with me! I had been open about my CVID from the start and M took it in his stride, happily taking on the role of my infusion buddy each week. In June he proposed to me, and the following March we got married.
I had planned every detail of the wedding meticulously, and it really did turn out to be the wedding of my dreams. The speeches were very emotional, as my Dad spoke about how far I’d come in the past ten years. I made a speech acknowledging how hard it must have been for my parents to have seen me being so ill for so long, and telling them that I wouldn’t have made it to my wedding day without them. Then I sang to M – something I’d been planning with our wedding band for months. There wasn’t a dry eye in the house!
M and I had decided we didn’t want to wait long to start a family, and we were elated when I fell pregnant in July 2008. We went for our first scan a few weeks later and were told, to my absolute astonishment, that we were expecting twins! I was, frankly, terrified. I’d been worried enough about how I would cope with a pregnancy and then a baby; and whether my health was up to it. How on earth was I going to handle two babies, and a twin pregnancy?
I did find the pregnancy difficult. I had severe morning sickness for the first four months, and then developed a bad chest infection. The antibiotic I usually used for chest infections was not suitable in pregnancy, so I tried others, but none were working. So then I had to be put on intravenous antibiotics, and had a PICC line inserted – a long tube that is fed into a vein in the arm all the way up to the space near the heart. This made it easy for IV antibiotics to be given twice a day, and it was arranged for district nurses to come and administer this for me.
The time came that it became painful to insert needles into my ever-growing stomach, and I had to temporarily stop subcutaneous infusions and start going to my local hospital every two weeks for intravenous infusions. The IV infusions affected me in exactly the same way as they had done years ago, and I would leave the hospital feeling exhausted and fluey. The only thing that kept me going through the infusions was the knowledge that it was a short-term measure, and that as soon as the babies were born I could go back to my beloved subcutaneous infusions!
At 37 weeks pregnant, in March 2009, I went into hospital for a planned Caesarean Section and gave birth to J and L. They were perfect, beautiful, and most importantly, healthy. Unfortunately I had lost a huge volume of blood during the birth and spent the next two days in the High Dependency Unit. But after receiving a blood transfusion I regained my strength, and five days after my babies were born we were allowed to come home.
J and L are now three years old. They are absolutely wonderful. L has extraordinary communication skills and is extremely bright. She wants to be continually stimulated and, whilst I adore her and am incredibly proud of my astonishingly advanced little girl, she is extremely hard work! J is a sweet, sensitive, loving little boy. We have recently discovered that he is on the autistic spectrum, and are learning about how we can support and teach him. Parenting two such unique children would be hard work for even the healthiest of mothers, and I do end up asleep on the sofa as soon as they’re in bed most evenings. We also had concerns that J seemed to get unwell more often than L, and so we had him tested for Primary Immune Deficiencies. Whilst I felt I could cope with him having autism, I was frantic with worry at the thought of him going through what I’d been through. I was so thankful when his results came back as completely normal.
Unfortunately my health hasn’t been so good since my pregnancy. My chest infections have been much more frequent and my ability to work has been seriously affected. But I’ve realised that life is about prioritising. It’s true that my career has suffered. I’m back to being permanently exhausted and I’m not keeping on top of the housework. Or my social life. Or anything else.
But right now, life is all about being a Mum, and I’d like to think I’m doing a good job. I remember a time, not so long ago, when I couldn’t imagine ever being in a situation where I’d be able to cope with having children; and when I found out I was having twins I just didn’t think I’d possibly manage. Instead though, my children are beautiful, funny, happy and healthy. I have no problem at all with the notion that I’ve sacrificed my own energy and strength for this. After all, show me any mother of twin toddlers who isn’t constantly tired? Add to the mix CVID, autism and everything else that makes our family extra special, and I can’t help feeling pretty proud of myself for simply surviving each and every day!