When I was first diagnosed with Rheumatoid Arthritis, I wasn’t particularly sad about it. I was merely relieved that they knew what it was and I could be cured. I thought they must have a pill to make me all better. I left the consultant’s office at the private hospital feeling hopeful that the incredible pain I was in could be over soon and I would be alright in a matter of months. The reason I was at a private hospital was because I was in absolute agony and I could not wait the four weeks referral time into NHS rheumatology services. I had for the last two months slowly become more and more immobile, as pain as sharp as shattered glass ripped through every joint in my body. What started in my hands and feet, to which my husband dutifully rubbed and massaged every evening, was soon everywhere, in joints I was not even aware I had and had to google (sacroiliac joint, which I found after googling ‘pain middle pelvis bum’). The things I could not do was enormous; I could not touch my fingers together or make a fist, I could not bend my elbows, I could not move my shoulder, I could not put any pressure on my wrists, I would not bend down, I could not put too much pressure on my feet and ankles, I could not bend my knees, I struggled to move my neck and every time I chewed, the pain from my jaw joint was excruciating. In case you are not sure what this means in real terms, it meant that I could not pull my bed covers up over myself or push them back off, I could not adjust my position in bed, I could not hold cutlery or a pen, I could not pull trousers up, get socks on, brush my hair and teeth or open door handles, get into the shower or back out, I could not walk down the street or anything else. I was immobile, and in constant agony greater than I thought I could bare. So one evening I found myself in a consultant’s office begging for anything to help me through. I was signed off from work for three months and I felt awful.
Then something I did not expect happened. The effect of the constant pain, the immobility, the constant severe fatigue of the disease coupled with the facts that I was completely isolated, at home alone day after day unable to get out of bed to even get some water, not able to work, or do anything else, I became seriously depressed. My life was lost to me. I felt as though I was a terrible employee, a terrible wife, I felt as if I had no family and no friends and all my life ambitions were suddenly so unachievable. Every night I would pray to not wake up the next morning, and the sudden jolt of pain that indicated that I had woken up was the world once again telling me that my prayer had not been fulfilled. Everyday more despair. I am certain that I have never cried so much. Everyday on waking I would cry, I would cry most of the day and still be crying when my husband got home. Not the most romantic homecoming for newly-weds.
So hearing that I had Rheumatoid Arthritis didn’t bother me. I left the consultant’s office with a body full of steroids and was told that in 24 hrs I would be relieved of all pain and back to normal. Great! No big deal.
The injection wore off in less than two weeks and I was once again sat with a rheumatology consultant crying.
The truth is that Rheumatoid Arthritis is not just achy joints and it is not something that can be cured by medicines. It is a serious autoimmune disease that I will have for life, in which my body attacks my joints damaging them permanently with strange deformities. When I first heard that news I realised that it was a big deal. Pain, immobility, joint deformity and sever fatigue for the rest of my life. That takes some strength to come to terms with, a strength that I sometimes have and sometimes don’t have. I am no longer bed-bound and I am no longer in a crippling pain that means that I can’t do anything in my days. I am back at work and back to my swimming, walks in nature, crafting and cooking and most of the other things in life that makes me happy- I’m just a bit more uncomfortable when I do them. I am still in low levels of pain and I can’t close my hands and other smaller limitations, and I get terrible fatigue, with some days being worse than others. Sometimes I think I can live with it and sometimes I am so frustrated that I am convinced that I can’t. However, the story does not end there. I have lots of fears about how my disease has limited my life; will I ever get a promotion when I have to work from home so often, will I be able to take on a new job and challenge when I am constantly challenged by my disease with all the appointments and time that that takes, will I ever be able to go out dancing again, will I ever be able to just accept invitations to go places, meet people out, other things that seem impossible in my current state. I am better than I was at my worse, but I am still not great. What I regret the most is the fact that while I am being treated for this disease- this disease that will never go away- my husband and I are not able to have children. I feel an enormous disappointment in myself, in my role as a wife, in the shared dream that my husband and I had to start a family and it’s me who is not able to deliver on those shared promises we made when we got married and took our vows. This fact hurts me immeasurably. It is a bitter and crude sense of self-loathing that I have coupled with a more innocent sense of loss of the child I am so ready to raise.
The current medical treatment of RA is a lot of chemical drugs. I have been on three of these, and they have not worked on me, my inflammation is still incredibly high and my joints are still at risk of permanent damage. I have days struggling to walk and days where I just sleep for hours as I battle fatigue. My doctors have told me that they want to try using biological drugs instead. These drugs are seen as a good option for me as they could move my disease into remission; they also come with serious health effects of infection, cancer, MS and lupus as well as the lower grade side effects of dizziness, headaches, nausea, etc. The doctors tell me that this is my best bet. That alone makes me shudder and wish things could be completely different for me.
Through all this torment and uncertainty, physical, mental and emotional pain, deep depths of depressioin and crushing anguish has been my husband. My true love and best friend who has helped me, supported me and encouraged me, showered me, brushed my hair, dressed me, proof read my work, attended appointmets with me, cooked for me, finished all the house work, driven me around, constantly ensuring i am as comfortable as possible, cared for me and loved me relentlessly and endlessly. Who never questions what on earth the food we are eating is, never once asked for a steak and chips and never once ever let me believe the terrible things I have been feeling about myself through this whole eighteen months since I started suffering from the disease. He even managed a few giggles out of me when I thought it impissible.
I suppose this is a brief history of why I started writing this blog. A dream and determination that there must be a better way for me get rid of this disease in my body. That I could let my body heal with food alone. I keep reading about people who have healed themselves through their diet and lifestyle and I know that I can too. I can’t go through life with these limits on my dreams, with this emotional nothingness that the depression brings me, with all this pain and without a hope of ever having a baby. Speaking to my rheumotology consultant today has made me more determined than ever to really stick to what I have learned on this journey in healing nutrition. I am convinced that I am doing the right thing in focusing on my gut health, eating a mainly wholefood, plant-based diet. I can’t wait for the day when I can say that ‘I did it!’, when I can come onto my blog and write ‘I healed myself and I learned how to do it myself and I am no longer on the drugs and I am now a mother, and I am truly happy’. I don’t know if that day will come soon but I know that I will keep on working at it until it does.