It was summer, the kids were off school and the Norfolk countryside was calling us to cycle its beautiful lanes. It was also the day that I got the first pains. It wasn’t in the easiest of places either, my right bum cheek. It felt very similar to sciatica, which I had the joy of experiencing during pregnancy. It was incredibly painful and made walking impossible. But I was hoping that the bike ride may sort it out and un-trap it. How wrong was I. It got worse the further we got and I had to push through the pain around the country lanes, as I didn‘t want to let the kids or the dog down, who was also hindering my cycling even more. Maybe this should have been my first lesson in listening to my body and the noises it makes when it needs rest. But as usual super mum had to continue and the very next morning I was in agony. I went to my GP (yet again, I was a serial appointment maker) and he looked me over.
Prognosis… probably sciatica – take a few anti-inflammatory painkillers (nurophen) and it should go away in a week or so.
The following week my right hand started to hurt. But I had been learning lines for a play I was in, by writing them out over and over and over again with a pencil for hours on end. Again, like the sciatica situation a week previously, it felt like a trapped nerve, but this time in my wrist. I put it down to RSI (repetitive strain injury), took some more painkillers and muddled on. The pain eased but was still niggling away in the background and I had a special day in my diary, my best friend from school and her family were coming over for lunch. The house was full and I was being the dutiful hostess, keeping everyone fed and happy. It was so wonderful to spend time with them all as it had been at least 10 years and I certainly wasn’t going to cancel because my wrist was hurting. But as the day went on, it was really starting to become an issue. The painkillers weren’t touching the sides and by the time they left, the pain had spread up my arm and it felt broken. Tears just fell down my face, I was in so much pain and nothing I did helped to get me comfortable. I had to call the GP… again!
Prognosis… possible RSI – take some more anti-inflammatory painkillers.
A week later I was back in the GP’s again, the pain had now started again in my right wrist and also in my left. This time I hadn’t been writing for hours with a pencil or cycling like a loon with a dog on a lead (FYI – that’s really hard and may I also add slightly dangerous for a dog and its owner) but I had been driving for hours across the country for three hours. It was my beloved and cherished Grandmothers funeral in Oxford. I did all this, read my heartfelt and emotional eulogy that nearly broke me and then after the wake, I drove all the ways home, for another 3 hours, back to Norfolk. All in a day.
Prognosis.. Not sure, lets do a blood test.
You know its not good when a Doctor calls you a day after your blood test to speak to you. My bloods had shown up a low white blood count. I had possible neutropenia and they wanted to do another test in two weeks.
I didn’t make two weeks. Yet another ‘flare up’ and this time it was so bad it felt like I had two broken arms. I couldn’t open the plastic lid off the butter, or turn the dial on the shower. My eldest daughter who was 12 years old at the time, had to help dress me, as the pain was too much to pull anything on. To this day I still have no idea how I drove both my kids to school, but on the way home, I pulled into the GP’s and asked to see an emergency Doctor. I saw a lovely new registrar, he looked into my files and once he saw my blood results, he asked me to wait for a moment in the room while he went to have a chat with the Doctor overseeing everything. About 10 minutes later, both of them returned to the room. I had two Doctors looking me over with concerned faces. Happy Days.
Prognosis.. You might have leukemia, lets get you seen a.s.a.p. by a specialist consultant.
Luckily, as I have been a walking advert for perfect health the past 14 years (I am being ironic), my husband and I had decided that a little bit of private health care wouldn’t go amiss. So my appointment with a consultant came through really quickly and I had an appointment within a week to see Dr X. It was a long week before the day arrived, yet I maintained positivity that I was going to be okay. First impressions Dr X was a lovely fellow and he asked me many questions. I informed him I had felt a little achy and under the weather, that I felt tired, but I had been over doing it and had been having some pains in hands, feet, knees and rib cage. He sent me off down the corridor to the phlebotomists room to have 8 viles of blood removed from my arm (I HATE NEEDLES, this was not a joyous moment in my life) that would check me for parvo virus, Lyme disease, ASOT, DNA B, anti nuclear factor, rheumatoid factor and Anti CCP, oh and my thyroid function, pretty much everything under the sun. He then shoved a steroid injection into my sweet derrière and sent me on my way. The results would be back in a few weeks.
Prognosis… possibly Viral Arthritis, definitely NOT Leukemia.
Thank f@@k for that.
A few weeks later I am back in the hands of Dr X. Feeling better as the steroids had taken every little bit of pain I had away. No backache, no neck ache, no joint aches. I was feeling bloody marvelous and slightly super human. All hail the steroid.
He asks how I had been. GREAT.. I replied. I was currently lead in a play and was more concerned that I wouldn’t be able to perform if it came back again. I didn’t want to let the cast and director down as we had been rehearsing for a good month or so and opening night was looming. Dr X was fully aware of this predicament and happily gave me three weeks of steroids to take whilst we got the play out of the way. He had all the blood results back and nothing had shown up, except for one. My Anti-CCP count was high. I had no idea what this test was for. He said it was a concern as it was accurate for rheumatoid arthritis, but reassured me that it still could be viral. In my happy-go lucky and high on steroids way, I just shrugged off this test, not even enquiring a) what is an Anti-CCP test or b) why would it be a concern. As far as I was concerned it was a need to know basis and I didn’t need to know, as all I had was a little virus AND, I felt great!!
Unfortunately a few weeks later when the steroid in my butt wore off , my super human powers disappeared and I was fully aware of every little ache in my body. Out came the prescription and I made the decision to take the tablet steroids instead. The play went ahead with me in it.
Two weeks on these little steroids pills and I wasn’t feeling so great anymore. They were re-named in my house as ‘the bad tablets that make mummy angry’. I had turned into what I can only describe as superhero villain over night. When the red mist came down, I felt like the Incredible Hulk, I just wanted to throw chairs and smash up my entire house. The family stayed well out of my way during these moments, which were becoming more frequent as the days passed and life as we all knew it changed. I was grumpy with a lot of people. People pissed me off. A huge dark grey cloud had arrived over my head and I was having a real hard time shifting it and sometimes it felt like an outer body experience.
The play finished with fab reviews. I was so happy I had seen it through to the finish line and achieved an ambition. Just before the end of the run, I decided to come off the steroids. They were making me feel nauseous most of the time, giving me awful guts ache and I just couldn’t be faffed with feeling like I was about to commit grievous bodily harm through anger everyday. Also physically I was feeling fine, there had been no ‘flare ups’ and I thought that maybe the virus had gone already. I still had quite a wait to see my consultant again, three months, so what was the harm in just coming off them. I emailed my consultant and he said that as I hadn’t been on them that long, I could just stop taking them and let him know if anything cropped up.
A month nearly went by, I had been absolutely fine. No pains at all, no nasty steroids to take, life was getting back to normality and calm in my life had resumed once again. It was a really busy time for me with work in the run up to Christmas. At least once a week, I was up with the sparrows to get the kids to school and then catch a train from Norwich to London for a Voice Over in Soho and then back again in time to pick the girls up from school. Always a mad rush and sometimes a little stressful, but a great feeling when its finally achieved.
One of these mad dash weeks, I had to get the train from Norwich to London and back to Norwich again by the afternoon. I then had to collect my car as it was having its windscreen fixed and then drive down to my Mums house in Essex later that afternoon. She had just had an operation to remove her bowel cancer and I wanted to spend some time with her. I then had to drive to Brighton the next day from my mums for one of my best mates 40th birthday weekenders. It was going to be a busy and manic few days ahead, but I felt good and ridiculously excited about my weekend away after the last month of pills, anger and general shit that went with it. The drive to my Mums was a good 2 hours away from me and by the time I arrived in Essex, both wrists were starting to niggle, like I had trapped a nerve again. I wasn’t happy.
The next morning I woke up and they were still niggling! I was concerned. I still had another 2 hours drive to Brighton to do and knowing how my wrists had played up in the past when I had driven for a long period of time, I didn’t want to risk it, let my mate down or miss the fun in Brighton. So I emailed Dr X again to let him know that I had decided to start taking the steroids again to control any issues I may have after the long drive. Friday night was a BIG night. Lots of shots, laughter, dancing, more shots and then I passed out around 1am as drinking had commenced at 4pm. I have to admit I did feel pretty disgusted with myself the following morning as I wretched for the 4th time over a dirty loo! The party house was trashed, as was my body.
I managed to pull myself together and actually get my sorry hung-over to hell arse some fresh Brighton sea air. I even had a bite to eat and managed to keep it all down. I finished off my afternoon with another little nap before us party people were all to meet up for the big birthday meal in the evening. But my hangover was not my main concern, my wrists weren’t feeling great. I was anxious that if they really started to play up like they did a few months back, I wasn’t going to be able to drive all the way home. And I needed to get home as my husband was leaving that Sunday afternoon to go away for work. I just couldn’t risk being stuck in Brighton, feeling ill and jeopardize his work! So I had to bail out of the meal and the rest of the birthday fun. Feeling pretty rotten and pissed off, I went to stay at my friends house down the road. The next morning, I felt like a new woman after an amazing nights sleep. I drove for nearly 4 hours, Brighton to Norfolk via collecting the kids from their Uncle Simons house in Hertfordshire, it was a long old schlep and my wrists were feeling the pressure! I paid the price when I got home, but at least I got home.
The email I had sent to Dr X prior to the Brighton weekender prompted him requesting yet another visit to see him at the beginning of December. That day I had a little thumb ache on the right hand and a ‘trapped nerve’ feeling on the left wrist, but had not taken any more steroids since Brighton. That was the day my whole world changed. Sat in his office with my husband for support, Dr X told me that he was now convinced that I had rheumatoid arthritis. I’ll be honest; I didn’t really know what it was all about. I had heard about it, but didn’t know the real depth to the condition, let alone that it was actually an autoimmune disease. He sent me off to have x-rays on my lungs, to make sure they were clear and I was ‘healthy’ enough to go on the medication, Methotrexate (MXT), which would keep the condition under control and stop it from progressing. I also had more blood removed from my veins to check my liver function. This would now be monitored regularly while on MXT, as the chemo drug can cause liver failure! He also got x-rays of my hands to monitor the progression of the disease.
Before I left Dr X’s consultancy room, he said, “Whatever you do don’t go on forums or google anything, it will just scare you.” I promised I wouldn’t and said that I hadn’t googled anything about it prior to the appointment. And I hadn’t, the reason for this was I was convinced that it was just reactive arthritis linked to a virus and exhaustion and that all would be over in a matter of weeks. I had absolutely no knowledge of what RA actually was. As far as I was concerned it was just a form of arthritis, nothing major and in my beautiful world of positivity, I presumed that I would be able to get over it all and sort myself out with a change of diet or something equally as simple. As I left the hospital with my next appointment for a week later, I felt slightly bewildered by it all.
Diagnosis – Early onset rheumatoid arthritis.
As I got into the car, I chose to ignore the advice he had given me all of 3 minutes previously. I immediately got on my phone to find out what this rheumatoid arthritis was all about.
An autoimmune disease that is a life long condition with no cure, yet. The immune system attacks the lining of the joints (the synovial lining). This causes inflammation, which leads to symptoms such as pain and stiffness. It’s a systemic disease, meaning that it doesn’t just affect joints. RA can affect a person’s whole system, including organs such as the lungs, heart and eyes. If RA is not treated or is inadequately treated, it can cause irreversible damage to joints and lead to disability – and this used to happen often. But today, the management of RA is very good, far better than it was even 15 years ago. Although there is no cure, most people diagnosed today can expect to lead pretty full and active lives once the disease is under control.
Click here to read what happened next.. xx