Living with Rheumatoid Arthritis
As some of you may or may not know I myself was diagnosed with Rheumatoid Arthritis 2 years ago, It occurred around my 31st birthday, ( Happy freakin birthday!) Since then I have still been coming to terms with it. Trying to ‘’Live with Arthritis’’ as there is no known cure.
You may think that Arthritis is just for ‘’older people’’ but children as young as 2 yrs of age can actually get it.
In this blog I just want to let you in on my story in case you have similar symptoms and maybe need to get checked.
It started one morning as I got out of bed my feet were in excruciating pain and I simply collapsed back into bed. I had just taken on the salon business so I was under a lot of pressure and didn’t need something like this inhibiting my day to day life!
When I went to the doctor he told me to get physio done so told me to go see a podiatrist which I did at huge personal expense for 6 weeks. The pain was there but easing off and appeared to be migrating to my wrists and hand????!!! Symptoms I noticed were a dull ache – kind of like that pain when you fall directly on your knee as a kid and its so painful the first few seconds! and you cry and cry! Except that first few seconds never stops……..It was in my wrists, fatigue (nothing to be sneezed at) irritability, extreme pain all over, mood swings, constant feeling of weakness, strength depletion.
She was on the ball and after a few questions regarding my sleep pattern, tiredness levels, pain level and general mood she had an idea that there was an underlying problem.
The podiatrist recommended I get my bloods checked for ‘’my CRP levels and Rheumatoid factor’’ I’m like ‘’what the F#*k is that!? But ehhh ok sure ill go get bloods done.
The pain was getting worse each day with my body weakening and not being able to do simply tasks such as light housework and chopping of veg, lifting the coal bucket, opening a bottle of water. This really freaked me out! I had a business to run , a brand new one at that!
Within 2 days of the GP taking my bloods my pain became unbearable, I couldn’t wash or dry my hair or tie my hair with a bobbin, it hurt my fingers and wrists too much. I couldn’t get dressed without screeching in agony and therefore had to choose easier items of clothing , no jeans no more! I had to get to the Doc to obtain pain relief so he gave me steroids to cope until we received my bloodwork.
I dunno if you’ve ever been prescribed steroids? But oh my GOD they’re amazing! They reduce inflammation, give you extra energy and basically make you feel like superwoman! BUT they are also highly addictive so long stints on them is not recommended so I knew I wouldn’t have these badboys for long!
Within 2 weeks I was seen at the hospital by referral from my Doc after getting my bloods back which showed extremely high inflammatory levels – crp (9 C reactive Protein) who stated that I was an ‘’Emergency case’’
My Anti CCP levels ( as I loosely understand it) should be below 20 and mine were at 95 so this was serious!!!!
‘’Another test which is ordered when rheumatoid arthritis is suspected is the anticyclic citrullinated peptide (anti-CCP). The normal level of anti-CCP is less than 20 u/ml. A level above 20 suggests the possibility of RA’’
I went to see the ‘’bone and joint unit’’ for my appointment at St. Vincent’s hospital Dublin. This is where I was basically handed my diagnosis and put on my first meds. The Doctor was pretty black and white and just wanted to give me my prescription. I just sat there in shock ……
A rheumatoid nurse then came in to do all the explaining for me and help me get an understanding of what just happened! It went a bit like this –
Nurse: ‘’ ok so you have rheumatoid arthritis, it’s a life long illness, its not curable but it can be manageable on the right meds. This means your Immune system is attacking your healthy cells thinking that they are an invasion and the swelling and pain is because of this’’
Me: ‘’My immune system sounds like an as$&Ole ! Why though? Why is this happening?’’
Nurse: ‘’We don’t know we are still working on this, there is lots of research around the cases of Arthritis and there are many different types and strains’’
Me: Right … (tears)… will I be able to work? And do all the things I normally do?’’
Nurse: ‘’You may have to change a lot of things in your life, you should really reduce your work hours, is there anyone who could take over for you? You need to rest. I know this is a lot to take in’’
Me: ‘’Im self employed its my biz, I cant afford to hire anyone right now or take time off! I need to work! What the hell am I gonna do!? I have bills to pay’’
Nurse: ‘’You can take the steroids prescribed until the medicine kicks in and starts to work but be aware the medicine is an ‘’immune suppresent’’ so you will need ot be careful around sick people and public places as you will be prone to catching things very easily as you won’t have an immune system support.’’
Me: ‘’ How long will I need to take medicine?’’
Nurse: ‘’ For the rest of your life’’
Me: ’’So I’m f$cked then!?….’’
I left the appointment feeling like my life was over, like … (It was very upsetting and hard to get my head around ) I’m sick now im just skidding to an early grave, what can I contribute to society now?! I’ll never be a ‘’normal 31 yr old’’ The reality was and still is that :
I can’t do yoga cos it hurts to hold myself up, I can’t go abseiling cos I can’t hold my own weight, I can’t go back to horse riding or play the guitar because it puts too much strain on my joints particularly fingers, I can’t hold open a heavy door for someone out of politeness, or lift a heavy suitcase or box, I can’t do copius amounts of housework or make all the dinners I used to that involve heavy lifting of full pots of boiling liquid or involve lots of whisking’’
I now take 10 tablets called methatrexate once per week and a large 125mg injection which makes me feel physically ill like throwing up everytime i take it. The pills I take are also used to fight cancer it is said and they can really mess up your liver. It is advised to wash your hands after taking them and do not allow childen or pets to come into contact with them as ”THEY ARE POISONOUS” hmmm… right so why a i putting them in my mouth again? lol
I don’t want to stop working, im not gonna!!! Ill manage, ill push through it, cant let this crap beat me! Maybe there are ways around these things or different things I can try.I look grand no one will believe me. This illness has made me feel useless and weak…. And I don’t like that! So I will NOT be accepting that!
So the moral of the story is not all illnesses are visible , please don’t make snap judgements on anyone who parks in the disabled space , they may have the right but look physically able bodied. They may be ‘’having a good day on their meds’’ Don’t think that ‘’ Arthritis’’ is just achy bones, everyone gets it anything like that. It is debilitating illness and can make you feel very down and lead to depression also. I know there are many life long illnesses out there and I thank my lucky stars that there is any manageability in this one but early diagnosis is so incredibly important so you better CHECK YOSELF!
One thing though – even though this IS a life long illness, it is NOT on the life long illness list? How can this be???? Hmmm???
There is very little awareness about Arthritis and that’s what I plan to raise going forward. If you have concerns go get checked and don’t just fob it off as ‘’ ah its just a little ache ill be grand’’
A great support and resource is the Arthritis Ireland website and their facebook page for people diagnosed, check it out :