This isn’t a story that I particularly like to tell but for this purpose I think it will help you to understand that you are not alone. In fact, you might find that there are quite a few parallels.
I had always felt not quite up to par with my peers while growing up. I just didn’t understand how they could physically do some things, or even want to! I put that down to basic differences between people and just assumed that I was meant to be academic rather than sporty.
As I got older and during early adulthood, I found that many things in seemingly unrelated biological systems were going wrong. From IBS, to migraines, to infertility and many problems with pain. In every case the doctors were unable to offer any more than basic control of symptoms without being able to find a cause. I even underwent exploratory surgeries at one point.
It got that I thought I was losing my mind and I was afraid of being seen as a hypochondriac. I was missing work all the time and missing out on social events.
After trying to have a baby for years and finally being told that I was unable to carry one (8 miscarriages in all) my husband at the time and I decided to do something different with our lives and we moved to California where I had a job as a medical research fellow at UC Davis.
Would you know it? I fell pregnant within about 2 weeks of being in the Californian sun. Of course, I panicked thinking I would miscarry again but somehow my daughter hung on in there. I had a beautiful, and noisy baby girl after 5 years of trying and then giving up. All I needed was a much slower pace of life it seems and some sunshine!
After Megan, was born though I got worse. I had to have my gallbladder removed when she was only 3 weeks old. I had developed severe dermatitis while pregnant that just got worse and now my left ankle was swelling up and bruised and in the mornings my feet and ankles were so, so painful that I was unable to stand let alone walk.
When Megan was just 2 months old we moved back to the UK. There was snow on the ground when we got home and the sudden cold just increased the intensity of my pain. My Dr told me it was post natal depression! As far as I knew PND did NOT cause extreme amounts of pain!
I went back to work at my old job, commuting about 4 hours on top of a 10 hour day and then being up all night with a poorly baby. I was very lucky that one of my colleagues, a doctor, asked if he could see my ankle as I was limping so badly. He referred me privately to a rheumatologist and dermatologist (as the NHS had let me down) where I was diagnosed with my first autoimmune disease, psoriatic arthritis (very similar to rheumatoid arthritis).
Finally! I wasn’t depressed! I wasn’t a wimp! I wasn’t a neurotic new mother! I actually had developed an autoimmune disease at the age of 29 due to the physical strain that pregnancy had put on my body while having gallstones at the same time. Finally I was starting to get some answers.
I went down the checklists of treatments until I found the anti-TNF injections that worked wonderfully for my joints and my skin. After 3-4 years my ankle started to go down and look normal again. Although I do still have the discolouring 10 years later.
My story doesn’t end there though. Despite treatment that was a success clinically I still had a lot of pain that seemed random and would move around. I was extremely exhausted ALL THE TIME. I had to stop working in the lab and then moved to a desk job. Finally I was medically retired in 2009.
I asked my Dr for a blood test after bruising lots and getting nose bleeds all the time. Something that had never really been a problem before. It came back with a platelet (the clotting cells in your blood) count of 11. It should be between 300 and 500! No wonder I had bleeding issues.
The first thought on everyone’s minds was that it was leukaemia. I had lots of blood tests and a bone marrow biopsy (ouch!). Thankfully it wasn’t leukaemia but I had another autoimmune disease, ITP (Immune Thrombocytopenia) where my immune system was destroying my platelets and preventing my blood from clotting efficiently.
No treatments have ever worked for my ITP. In fact one caused me to have a mini stroke. This was around the time that I was retired. A few months later my husband left as he has an aversion to illness and didn’t want to be with a cripple. Nice huh! Don’t worry, it turned out to be a blessing.
I struggled on with increasing illness and being a single parent. Without a job I turned to crafts to keep me going. I went to a pottery class for a few years and this has become one of my passions. I loved it so much that I found a 2nd hand (actually 3rd but who’s counting) kiln so that I could do pottery at home as well. I even have a 2nd hand pottery wheel now and that is soooo therapeutic. My troubles wash away with the feel of clay running through my fingers. (Queue the Righteous Brothers with Unchained Melody!) Do you see where this blog might be heading now?
It is around this point that I said goodbye to my old self and started to reinvent the new Cath. I signed up for online dating and started to go out again. After a few dates I met my (unknown to me at the time) new husband. The wonderful thing is that he has never known the old me so he doesn’t have any expectations based on her. He loves me for exactly who I am now. I joined various support groups online and particularly on Facebook. I have made a lot of new friends who all have autoimmune problems. We like to laugh at Arthur(itis) and poke fun at him. It helps to see him as a separate entity. My daughter shouts at Arthur when we have to cancel something rather than at me. It really helps to vent your anger away from the sufferer and help to reduce their guilt. Oh boy! Guilt is something that becomes your constant companion so anything that helps to make it smaller is worth trying.
My life is very different now but in many ways a lot more fulfilling. I have my wonderful daughter who makes me so proud every day, a loving and very understanding husband, I have my pottery workshop in my garage that I will share with you sometime, and I have found the only person stupid enough to employ me… me!
I am now a small business owner and sell my pottery and ceramics online. I have made lots of new friends online who are crafty as well. This gives me a positive outlet that has nothing to do with illness and makes me feel alive again. In fact, I don’t think I was alive while in the rat race and stifled by my ex. My chronic illness has taught me to slow down and see the beauty in the world around us. It has made me a better person.