Single with Rheumatoid Arthritis

On Friday 11th August 2017, I was diagnosed with Rheumatoid Arthritis. I was getting pain and swelling in my wrists and fingers and couldn't figure out what it was. I thought maybe I had torn ligaments in my wrist after doing a fairly strenuous pilates class. I laughed it off thinking I had once again injured myself by doing something a bit silly but after a few days, when I cried out trying to lift the kettle, I began to get more concerned. I took myself off to A&E where they sent me for an x-ray and told me that I hadn't sprained my wrist or torn anything but there was definite swelling and heat in my wrist and I should probably go back and see my GP.

My GP did blood tests and said the results indicated my rheumatoid factor was very high. I didn't know what that meant. She gave me an immediate referral to a Rheumatoid specialist in Winchester and 2 weeks later, I sat in her office and cried and cried as she told me how this illness was now with me for life. There was no cure. It was something that could be managed but I should be prepared for my life to change and I would have to begin making major adjustments.

People say you go through 5 stages of grief when you are told something that is so significant as to change your life forever: Denial, anger, bargaining, depression and acceptance.

I think I am still in denial. I have only told a handful of people about the diagnosis because I thought I would get better. I thought as soon as I started the drugs, then things would improve and I could carry on as before. But it is becoming very clear that RA is not something that can be fixed. It can take months or years before the RA is controlled. It is so debilitating that my own Doctor has told me that I simply cannot keep going at the same pace and I must stop working. Stop working? I can't stop working. I am a freelance designer and if I don't work I don't get paid so how can I survive without working? Slowing down was not an option I thought. I will be fine. The doctor is just being cautious.

I think they missed out one of the stages of grief... panic. Because 6 weeks in to this illness I am crossing over from denial to panic as the reality sets in. I have only worked one day in over 10 days because I have never in my life felt so dreadful. Utter exhaustion that is so overwhelming I can hardly string a sentence together or stand up for more than 10 minutes. Dizziness and nausea, headaches and earaches, an ache so deep that it feels as if it's in my blood. Pain and swelling in my hands and wrists and fingers, stopping me from holding a pencil or a mouse or anything that I have to use for work. 

I wake up every single morning and hope that today I will feel better, that the drugs are beginning to work, that every single little tweak I have made in my diet and life is improving my health day by day and that today will be the day I can get up and go to work. But every morning I am being beaten by this illness. And now I am beginning to panic. I'm panicking because I am not earning any money and if I don't earn any money, I am in big trouble. I have no back up plan, or secret savings. I have no wealthy parents or husband or friends that can help me out. I have no one and have never felt so alone as I do now. To live with an illness on your own is one of the toughest things I have ever experienced. 

I have told my sister. She simply replied in a text: God, it sucks getting old doesn't it? She has no idea what I am going through and has no intention of finding out. She doesn't care enough to find out. I can't be bothered to educate her and so I don't. It would do no good. She has always been an incredibly selfish person and her way of compensating is by saying she has problems too. I sent her a text saying I had only worked 2 days in 2 weeks and I never heard back. She only lives in the next village and has never once offered to help me or to come and visit. I literally don't understand her. If I found out she was ill I would be there as often as I could. I would be at her side as much as possible to offer comfort and support. Yet she doesn't ring or come by.

I have told my parents but I have not told them how debilitating this illness is or how much time I am taking off work. I can't worry them because my mother suffers from depression and anxiety and it would simply tip them over the edge. I am therefore still in denial aren't I? otherwise I would be telling people. The thing is, the ones I have told just tell me it sucks. They don't really get what this is doing to me. They think I will recover that I will simply get better in a week or two. My doctor is the only one I am honest with, and in return she scares the shit out of me by telling me to stop working, stop driving, stop writing. She tells me to claim insurance but stupidly my insurance policy only pays out if you've been ill for 3 months already. If I took 3 months off work in order to claim insurance then I would be so ill from stress of having no money and not working. 

I've worked out that in order to survive, basic survival, without any money for anything extra, I need to work at least 2 days a week. That sounds crazily minimal but it would just be enough to cover mortgage and bills and petrol and food. I could survive on 2 days, it's wether I can physically manage two days right now. Seems impossible. It's taking me an age to write this because its actually really hard to type with my right hand and also to make sense of words and to actually use my brain power without feeling deflated. I had to cancel 3 days work this week because I just couldn't get out of bed. I don't sleep well, I'm in pain and so I don't wake up feeling in the slightest refreshed. I feel at my worst first thing in the morning. Utterly depressed and useless. I cannot see a light at the end of the tunnel. 

I reach out to anyone to help and advise and support but I get nothing back from my friends or family. This illness is not known about, especially with someone so young, so I don't think they realise how bad it is. The only support I'm getting is from volunteers and charities, from my doctors and nurses who can see how ill I am. No one else. Maybe they think I'm exaggerating or am work shy. I don't know. But this is the toughest thing I have ever had to deal with on my own. Being single. It sucks almost all of the time, but now it sucks more than ever. No one to give me a cuddle when I ache. No one to bring me a cup of tea or go shopping for me. No one to look to for me and say kind things. Someone to believe me. Someone to love me.