In today's spotlight we will be talking about Rheumatoid Arthritis. Today is Rheumatoid Arthritis Awareness Day.
Here is what she has to say:
It's 2am and I'm awake. Wide awake. I cannot move my right arm or lie on my right side due to pain in my shoulder, my knees are both hurting, my leg muscles spasming. My ankles and feet are considering joining my pain party. I've already taken pain killers two hours ago and resorted to deep heat, none of it is working. I eventually drift off to sleep at around 5am. The alarm goes off, its 6am. Now I can't move. My hands are stuck in a claw like grip, my whole body feels stiff. I'm struggling to open up my hands. My ankles, knees, hips and shoulder all hurt. I feel like an 80 year old. I manage to get myself up, run my hands under the hot tap and get in the shower. I've got to go to work. In a zombie like state, I get myself ready for work, have some breakfast and take my medication. I'm so tired.
I have a 15 minute walk to the bus stop, some days I can work normally other days every step is painful. I then have to sit on a sometimes freezing cold bus for up to an hour to get to work. I used to own a car, but due to my illness I decided to cut my hours and couldn't afford to run the car. I work as a PA, four days per week, working 30 hours per week from 9:00 am - 5:00 pm. Throughout the day, my pain levels dip and peak. I also have waves of nausea due to my medication. I struggle to concentrate and just want to sleep. Simple tasks can be an effort, holding a phone (my elbows will lock), gripping a pen to write, typing. These can all cause me problems.
I usually arrive home from work at around 6:00 pm. Some nights I cook dinner at other times my partner will. By now its an effort to even stand up. After eating I take more meds. My evening consists of sitting on the sofa with my heat pad trying to control the pain levels that are increasing after rushing around all day. I can't take my painkillers too early as I will need them to help me get through the night. If I can't get my pain under control I know I'll be in for another bad night. Usually after a hot bath or shower I am too tired to stay up and end up going to bed around 9:30 pm - 10:00 pm. It's the only way I can manage to get through my working week. By this point I will have taken 8 prescription strength co-codamals. I can't afford to give up work yet and I push myself to keep up with everything as I don't want to let people down. This description of my day is quite normal for me. I have not had a day without pain in three years.
At the age of 38 I was diagnosed with Rheumatoid Arthritis. Oh I hear you say, my Nan, Dad, Aunt, Uncle has Arthritis. I have Rheumatoid Arthritis it is an auto-immune disease and different from the arthritis that affects many elderly people. My immune system mistakenly thinks its under attack. It then tries to fight this attack by producing too many anti-bodies which can then attack the joints, muscles and if you are really unlucky your internal organs. The result of this is inflammation, stiffness, pain, fatigue, deformity and mobility problems. The fatigue itself can be so debilitating and I would describe it as trying to wade through water. Rheumatoid Arthritis can affect anyone of any age and does not discriminate. It is an aggressive disease which has to be treated aggressively. Treatment usually takes the form of highly toxic medications including chemotherapy which can result in other complications. These medications work to suppress the immune system to try and slow down its attack on the body. This also makes you susceptible to infection and you can become very sick very quickly. Can you imagine having to take a low dose of chemo for the rest of your life? Side effects include, hair loss, stomach upsets, nausea, mouth ulcers etc. Chemotherapy can also affect the patients fertility making their chances of having a family particularly difficult. Sometimes remission can be achieved but for most patients this does not happen.
The only visible sign of my RA is my fingers are showing signs of deformity. They are no longer straight. Please remember that not all disabilities are visible. The next time someone is fumbling for change in the supermarket queue or using a disabled parking space yet look able bodied - they may not be.
There is no cure at this time for RA. It is a chronic, progressive disease. I am currently waiting to start another treatment called Anti TNF. Whilst this can be very effective it also carries risks. Personally, I try not to think about the future, its a scary place. This illness has taught me to be more aware of disability and those around me, to appreciate the little things and I'm thankful for the love and support I get from my friends and family. I will continue to take each day as it comes as no two days are ever the same. I would not normally write about my condition to this extent but today is Rheumatoid Disease Awareness Day. I don't want to be treated any differently and I have accepted my condition. What I struggle to deal with is peoples lack of empathy and patience. But, generally unless something affects someone directly they won't understand. This could happen to anyone. I have Rheumatoid Arthritis - but its just arthritis right?
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I'm sure we'll all agree that Rachel is fighting a terrible battle to continue a normal life. Again, it just goes to prove that you can never tell someone's struggle just by looking at them. Often the sick and disabled have a fight on their hands to be believed - it's hard to be believed by friends who have problems accepting the changes in us. It's hard to be believed by loved ones who see the tasks we do every day out of necessity but don't realise the toll it takes on us. It's even more of a battle to be believed by the the judging arseholes who write articles calling the sick and disabled 'work shy' 'scrounging' and 'lazy'.
If you want to share YOUR story of illness or disability with us, you can email me at leahjdm @ gmail.co.uk (Just remove the space either side of the @ symbol, I'm trying to keep spammers at bay.)
Thanks for reading.
