Saturday INvisible Health Spotlight #02

Hello lovelies,

In today's spotlight we will be talking about Rheumatoid Arthritis. Today is Rheumatoid Arthritis Awareness Day.

Rachel is 39.

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?
 
------------------

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.

Saturday INvisible Health Spotlight

Hiya all!

Today is the first installment of the INvisible health spotlight - stories of your health, of the health of your loved ones, children, friends and family.

The idea behind INvisible is to:

• Raise awareness of a wide range of illnesses, disabilities and medical complaints, many of which you can't tell just by looking at a person.
• Empower you to talk about your illness(es) in a place where you won't be judged.
• Reduce stigma about illness which is especially important as currently the UK Government are doing their best to paint the sick and disabled as work-shy scroungers.
• Personalise illness with names and faces. The Government wants to reduce us to one bunch of people all tarred with the same brush so it makes the public easier to hate us.
• Make the general public aware of the challenges chronically ill people face daily.
• But also show that being ill doesn't define us and we can still be interesting, vibrant people.

 TRIGGER WARNING - TALK OF BULLYING.
.
.
.
.
.
.


This week we have RDC who wants to tell us about her partial sightedness, depression and the bullying she suffered at school.

I am partially sighted. It's awful and I have been like this since I was 3 years old. My eyesight has gradually gone from bad to worse. I wore very thick glasses in school. When they got dirty, my Grandma used to clean them for me and I'd cry because I couldn't see anything. It made her feel very sorry for me. She tried to help me clean my glasses so I'd know my eyesight was nearer me. 

Basically, the scale for eyesight is mostly -20 to +20 on the scale in opticians. I am the only person in Bexhill with the highest eyesight. And there are a lot of old people in Bexhill. 0 is considered to be the perfect vision. I'm a +10 in both eyes. It's highly difficult to get my contact lenses. I have them specially ordered in. I can only wear one type of contact lenses out of the ranges because most company only go up to a -6 or +6 prescription.

 I have to take out my "eyes" when swimming or wear really expensive goggles. I have to have a larger text on the computer to  see what I'm reading/writing. When I take out my "eyes" at night, I have to get my partner to read out the text or time when I am not wearing my glasses.
 
Not wearing anything, what I see is like looking through frosted glass. I cannot see expressions, details or patterns. There is no known problems with eyesight in my family. So how I've ended up like this is a mystery. I hate it, I cannot have laser eye surgery because 1. Mother wouldn't pay for it 2. My eyes are too inverted to be lasered. 

 Most of living like this has caused my depression. I had it throughout school because of being bullied and having no backup. My parents never believed what happened to me in school. Not even when someone stole my glasses off my face and threw them across the playground. I was 14 and devastated that people were like this to me 5-6 days a week. Even out of school, people would terrorise me at home when the parents were away working. 

 My depression got diagnosed in 2008 when I turned 18. I refused to take pills. I took counselling for 8 months but it never came through. I soon pushed everything back but every now and then, the depression would flare up again. Some days I couldn't get out of bed. 

 My depression has come back worse in 2010. My best friend was near death. I had found out my ex was cheating on me and my parents wanted nothing to do with what was happening in my life. I was living alone and felt I had nothing left. I broke down infront of my best friend the night she came back from the hospital. I felt so selfish and angry with myself for doing so. When getting like this stressed and upset causes me to get gastroenteritis. That is a stomach problem where period pains, vomiting, pooping hurt and you even have trouble moving.  I took a lot of work off this year due to being very depressed. Work were just as helpful as my parents. 

I have kept my depression and lack of eyesight to a minimum around others and family. I never talk about it on Facebook because there are idiots on there who make fun. I never mention it at work. Only my close friends know about my depression but not into so much detail as I have not told anyone. This is only scratching the surface. 

RDC, Bexhill, East Sussex

-------

You don't think of extreme partial-sightedness as something the young suffer from. Thanks to RDC for being the first to share with us and remind us that often the last person we'd expect to have XYZ problem does, and suffers silently with it. This is why it's so important to talk.

I would also like to say a big, hearty EFF YOU! to bullies.

Thanks for reading.