When it was first suggested that I write a patient story for Lupus Europe, I have to say that I felt a little uncomfortable. Firstly, I’m an intensely private person and have so far never wanted to write about myself or write a blog. Secondly my ‘lupus’ is relatively mild (in the medical sense rather than the ‘effect-on-life’ sense) and my diagnosis very mixed… it was then pointed out to me that I’m not alone in this and people need to hear that story.
My problems started years ago with the very easy and seemingly unimportant diagnosis of auto-immune hypothyroidism (Hashimoto’s) but although my thyroid problems were easily controlled with medication I still wasn’t well. As there is a history of auto-immune diseases including RA and Polymyositis in my family, doctors looked into it but blood tests can be very difficult sometimes and results came back with low positives for different things at different times, with nothing clear. A positive skin biopsy seemed to confirm the more lupus oriented diagnosis and so that’s what my problems were originally called even though I had some very strange symptoms for a lupus patient. In addition, my symptoms and blood tests indicated probable Antiphospholipid syndrome (though because of a lab problem this was never confirmed). Luckily that has never been a problem for me unless I forget to take my baby aspirin – I tried that once for a couple of weeks and I wouldn’t recommend it!
In the beginning it felt very important to have a name for my disease. Many years on, I have realised that things are not always that simple and, in some cases, it can be very difficult for doctors to be precise. Most people will ‘only’ have one diagnosis and that is more than enough but I think it is important for our doctors, especially generalists, to realise that things can be more complex.
At the time I was diagnosed, I had quite a lot of inflammation and the pain was stopping me from being very mobile or even walking so I was put on prednisolone along with Plaquenil®. Suddenly, I could walk again and, as a bonus, those strange ‘atypical’ symptoms also nearly disappeared. My life was far from normal but it was a lot better. Later, I was also put on Imuran® and my quality of life improved with fewer symptoms. My blood tests – which had become more precise in between time – improved and, after a few years, I was able to stop Imuran. I was also determined to stop taking prednisolone because of its significant side-effects. That was much more difficult and I failed repeatedly. In the end one of my doctors decided to try partially replacing my prednisolone doses with a small amount of hydrocortisone. In that way, I was able to stop prednisolone but during that time and the next two years I became ill again – blood tests and symptoms showed that it wasn’t a ‘lupus’ problem. My symptoms became severe but no-one could explain, and doctors repeatedly told me that nothing was wrong with me. I was sleeping 10-12 hour nights and taking 3-4 hour naps… and the only answer I got from doctors was that I was “making myself tired from sleeping too much”. I knew that I wasn’t choosing to sleep, instead, I couldn’t stop myself from sleeping, but I was too tired to fight anyone (this led to other problems where I should have fought administrative and legal issues as well). On top of the tiredness, my ‘atypical’ symptoms had come back.
Eventually, we discovered that something else had been hiding, something we are now sure I had prior to lupus – auto-immune Adrenal Insufficiency (Addison’s disease). All my doctors originally thought that my adrenals were having trouble because I had taken prednisolone (a common problem with high doses or longer term use) but no-one expected it to be a primary issue and a separate auto-immune disease. This delayed diagnosis. Suddenly all the ‘atypical’ symptoms such as severe nausea, low blood pressure and other ‘Addison’s’ symptoms were explained.
All in all, it took 11 years from my first Hashimoto’s diagnosis to the last of Addison’s. Some of those years were better than others but now I am doing much better with proper treatment for my Addison’s in addition to my maintenance treatment for connective tissue disease.
Being diagnosed with chronic illness can be a very distressing process but, because I grew up with a mother who has Polymyositis, I wasn’t terrified of it (despite my mother being told, 35 years ago, that she had five years to live – she is doing very well by the way). I am also lucky to be more fascinated by such problems than frightened of them. This has helped me to understand but also to be interested in improving things in a practical way for others when I can.
Of course, I grieved the loss of my job all those years ago but I then realised that there were things that I had always wanted to do but had never had time for. I started to do more photography than I had, and spend some time writing, both life-long passions.
I can now work a little again. I also volunteer, both in Lupus Europe and at the local dog club. I am no longer able to ride horses (once my profession) but have found a new hobby – sheep herding – which takes me out into nature, where I can think of nothing except the animals I’m working with.
I find sports very difficult to do because the repetitive movements don’t suit the chronic tendinitis I have nearly everywhere but I walk a lot with my dogs and cross fields to work the dogs with the sheep, feed the sheep and look after them. Staying active can seem very discouraging at first but I think it’s very important not to give up and to find something that you enjoy (and that your joints allow). If you enjoy it, you are much more likely to push yourself a little and keep going. I know that if I wasn’t as active as I am, I would feel my joints more and have less endurance and more tiredness than I do so I feel it is just as important as my medication – which I take without fail. I am also lucky to have ongoing access to physiotherapy which helps me maintain a level of suppleness that I may lose otherwise. It also helps pain a lot.
The other day my generalist had a new doctor working with him and he asked me what advice I would give her. I said that although people like me are relatively rare, it’s essential not to put all symptoms in one ‘basket’ just because the patient already has a serious diagnosis such as lupus. By doing that, my Addison’s was missed for years and made me very sick, meaning I lost almost two years of ‘living’. Happily, I am now very busy making up that time!