This post is probably the serious bit but I feel you should know the start of my journey. As I’m going to try and explain as much as I can I hope not to make the posts too long, and I will break them into sections. In later posts I plan to share my past experiences in fighting with the wolf and continue to share more as I continue to live and learn.
A doctor once described how Lupus develops in one sentence ‘Genetics load the gun and environment pulls the trigger’. I truly believe that this is what happened to me.
On my mothers side there is auto-immune disease in the form of Coeliac disease, and on my fathers side an Uncle with another auto-immune disease Ankylosing spondylitis. So on both sides there were appearances of immune system issues.
Throughout my teens I was constantly tired, being in bed until 3pm during the holidays (if allowed by my mother!), looking back my immune system was being constantly attacked with recurring tonsillitis and various other viruses. By my late teens I had started working & earning money, driving, and had a couple of boyfriends. Along with these things came freedom to go out and eat and drink whatever I liked. I gained some ‘comfy’ weight, and was not treating my body well with what I put in it.
At 20 years old in early May 2006 I had a pain in my wrist, I thought that was strange as I couldn’t remember hurting it, left it for awhile but eventually went to my GP who gave me some initial anti-inflammatory meds. By the middle of summer, pain had spread to my knees and all over my body in every muscle. I was due a tonsillectomy as I was still having infections constantly. Prior to having the operation things were getting worse and I had been back to the GP numerous times. I was referred to Rheumatology Department at the local hospital. I saw an extremely long standing senior consultant who took one look me, listen to my story, looked at blood test results and said straight away he thought it was Lupus, no questions. He started me on a mild dose of Prenisolone to dampen pain & symptoms down, and said really the tonsils needed out and then they could really see what the Lupus was doing. I began buying books and researching.
A step back
Unfortunately the consultant himself went of sick when I was due back after having the tonsils out and I saw a ‘stand in’ consultant. This was awful. He completely dismissed the long standing senior consultant and told me “its just a virus”, stop all meds and basically get lost – or that’s how I was made to feel. Within days I was very ill, I was off sick from my job in a bank, and had an emergency appointment with the ‘stand in’ again and this time he said oh maybe it is Fybromyalgia. Okay I thought, there is a reason for all this, got more books on this different illness and began researching, but something felt off and from what I read it wasn’t the right fit for me. Within weeks in addition to the unbearable pain I had painful lumps/rashes, massive ulcers, headaches, reynauds, mild face rash and the exhaustion was horrendous. The ambulance was called twice as the pain was unbearable and my Mum didn’t know what to do. I couldn’t walk as the pain was so extreme, couldn’t even go to the toilet without help sitting. We went back to my very supportive GP and requested a second opinion against the ‘stand in’ consultant. My mother was preparing to pay to go private to get me seen by someone else.
Thankfully an appointment came through with a consultant ‘Dr K’ at the same hospital. Again his opinion was that it was Lupus. There were many tears at this point (as well as in the recent months) but right then I felt relief and also a bit of anger; here I was months later and back to the original diagnosis. Anyway my Mum and I tried not to dwell on this, as in terms of a Lupus diagnosis under a year was very good. He started me straight off on high dose steroids and Methotrexate, alongside other medications that you have to have when taking these things, and I also had steroid injections into my knees. I’ve spoken a lot about symptoms and diagnosis but this also affected my confidence and relationships. I looked different (although one of the frustrating parts of Lupus is often you look ‘fine’ and I found a lot of judgement in this). I lost confidence and had no idea what the future held or if I had one.