People often don't realise the extent of the challenges RA, Fibro, OA and deafness can pose to people who have this diseases. I get the usual comments of "you look well", "you're not old enough to have arthritis", "I've got a touch of that, you should take....."
I like to think of myself as a positive person but don't get me wrong, I have those days when I just hurt too much, I'm too stiff, I'm unstable so lock myself away in the house and people don't see me for days. Everyone has their own coping mechanisms to cope with the pain, the frustrations and the practicalities of having a super stiff and wonky body. Here are just a few of mine:
I have a wonderful hubby, kids and a select circle of friends that I can rely on to cheer me up, remind me that other people have a worse time, help me out, bring emergency care packages, take me out for a coffee and cake so I get out the house (thanks Steph :-) ) The day to day grind of living with any form of arthritis or fibromyalgia throws so many challenges from getting up and dressed to going to bed in the evening.
Just getting out of bed is a challenge. I have to grab the headboard to lift myself up a bit and hubby then helps with the manoeuvring out of bed. I take long deep breaths when the pain burns or smarts. of course I take my pain medication daily and my DMARDS (Disease Modifying Anti Rheumatic Drugs) but sometimes that pain breaks through like someone wielding a baseball bat that it takes your breath away, you panic, feel sick, cry.....by controlling my breathing I can try and control the pain.
Hot water bottles and wheat bags! ...these are my very best friends on unbearable days. They help with the pain and the swelling. I have a paraffin wax bath for my hands and feet.....its fab! My physio recommended I invested in one so it was my Christmas present to my self last year. The warm wax coats your hands (or feet) the warmth penetrates deep into the joints easing pain and stiffness.
Jars, tins, bottles etc .....imaging your hands being so stiff and painful you can't even hold a fork or toothbrush, let alone open a tin or bottle. I hate this because I feel so damned useless. There have been many times I have dropped something, not been about to grip something. Usually it end up with me being so frustrated it reduces me to tears. These are simple tasks that my 34 year old hands should be able to do. SO! we have a battery operated tin opener. It clips on the top, press the large button and it opens the tin....how cool is that??! I know...you're reading this and think "you're mad" but just having a gadget that makes things just a tad easier is like getting a birthday present.
I wear clothing that has a pocket in it so I can carry my mobile phone with me even in the home. My mobile has a T setting and is compatible with my hearing aids. This proved to be worth its weight in gold when I took a flying lesson down the stairs a few weeks ago. The flying bit wasn't a problem and Grendel my Owl would probably be proud of my efforts considering I don't have wings and my arms and shoulders are riddled with arthritis. However, I certainly haven't mastered the art of landing. Once I had stopped crying (sort of) from the shock and pain and I realised that I couldn't actually move off the cold tiled floor, I phoned the school reception and asked if they could get a message to Paul to come and help me. Paul was home within 10 mins, did a quick assessment which involved me screaming and using a few words which can't be published here. Ambulance is phoned and it takes them over half an hour to get to me. I'm gently put on a spinal board and strapped in. The paramedic has a wicked sense of humour thankfully but the prospects of possibly having a fractured spine is a sobering thought. Luckily I was just badly bruised and have a number of herniated discs. Another coping mechanism is humour.....the paramedic put me at ease, his sense of humour was similar to mine. I like to laugh and find the funny side of things. I laugh at myself because its easier than people laughing at me. I have a freedom pass (my creaky pass) and a blue badge....it has been know to be called my cripple badge lol!
Being positive and seeing the positive in a challenging situation helps me to cope with the life I am living. And I am living it. I refuse to give up. I need to keep going because my kids need me to keep going. I write this blog as a coping mechanism. I helps me get things off my chest and understand my situation. If my situation can help just one person know that they aren't alone then I have done well. I have a page on Facebook called The Invisible Challenge. Its about breaking down barriers and misconceptions. It posts links, help links and positive posts to uplift people. Here is the link if you want to have a look, like and share! https://www.facebook.com/TheInvisibleChallenge I also do videos to raise awareness. here is a few links to look at and watch:
The alternative spoon theory https://www.facebook.com/TheInvisibleChallenge/videos
Invisible Diseases Vlog https://www.youtube.com/watch?v=7g5lFfE2CAc
Spread The Word, Be a Pain Killer! https://www.youtube.com/watch?v=8BryN1jIPPg
Keep smiling and use your spoons wisely xxx
Friday 27 February 2015
Monday 23 February 2015
Blood Tests and Talks
Woke up at 12:17am, 03:30, 04:52 and 06:55 stiff, in pain and unable to roll over.......stupid arthritic back and hips. Kids are up and at 'em at 7am on the dot. I would say eager to go back to school following the half term jollies which saw them explore Stonehenge but I suspect not.
Today I have to go through the rigmarole of my monthly blood test to make sure the medication for the RA and PsA is beating the disease into submission and that my liver isn't throwing a major strop in the process. After getting dressed......including putting on tights which is like bending tree trunks and manipulating the unbendable to wrap in lycra and nylon. Daily morning meds taken....I get the bus to the hospital. Get ugly looks off the older folks for using a freedom pass and then sitting in a disabled seat.......they must think I've stolen the pass or something, but when I make eye contact they look away.
Arriving at the infamous Queens Hospital I make my way to the vampires waiting area and take a ticket......219......The number on the board is 133, it's going to be a long wait me thinks. T setting switched on on the hearing aids and I take out my kindle and chuckle away to myself reading John Bishops autobiography while waiting for my number to be called for the rather cheerful vampire brandishing a sharp needle to extract the required amount of my precious red stuff to check if the meds I plough into my body everyday are doing their job.......it was an hour and a half wait and took 2 attempts to stab the right place.
This afternoon I had the honour to talk to a group of lovely people at Arthritis Research UK about my experiences of living with arthritis. I take my time getting there in the hustle and bustle of London so not to use all my spoons beforehand. The group is friendly and welcoming an I run through my presentation. I had forgotten some of the photos which had been used and keep having a chuckle. The talk goes well and there are plenty of questions asked after. It's important to me to do these talks, raise awareness of arthritis and other invisible illnesses to break down barriers and misconceptions. It's charities like ARUK that give people like me hope for the future through their research and support.
Heading home it is bitterly cold and I am fast running out of spoons. Pain and fatigue are encompassing my body. A voice comes over the tannoy speaking in a language incomprehensible which, when translated by the frustrated lady standing on platform 3 of Mile End station says the glorious District Line has severe delays.........deep deep joy.
I decide, for my own sanity and safety, to step back from the barging hoards of non-smiling lemmings trying to make their way home from the rat race. Eventually a tube arrives that I can manoeuvre my stiffening body on to. The London Underground is not fully accessible for disabled people and the challenges faced by people of limited mobility blur into insignificance in comparison to the cost of upgrading the whole of the underground network.
Doing the talks and raising awareness for invisible illnesses including arthritis has shown me how much I have achieved despite the challenges I face. I continue to play the hand I have been dealt. I like to think I am a positive person......I don't moan continuously about how unfair this all is and not constantly questioning "why me?" I will continue to support those who feel lost and consumed by these challenges because it gives me purpose and I am proof that because my life has changed in ways I never dreamt of, it doesn't mean my life is over.
Until next time......Use your spoons wisely and keep pain free xxxx
Today I have to go through the rigmarole of my monthly blood test to make sure the medication for the RA and PsA is beating the disease into submission and that my liver isn't throwing a major strop in the process. After getting dressed......including putting on tights which is like bending tree trunks and manipulating the unbendable to wrap in lycra and nylon. Daily morning meds taken....I get the bus to the hospital. Get ugly looks off the older folks for using a freedom pass and then sitting in a disabled seat.......they must think I've stolen the pass or something, but when I make eye contact they look away.
Arriving at the infamous Queens Hospital I make my way to the vampires waiting area and take a ticket......219......The number on the board is 133, it's going to be a long wait me thinks. T setting switched on on the hearing aids and I take out my kindle and chuckle away to myself reading John Bishops autobiography while waiting for my number to be called for the rather cheerful vampire brandishing a sharp needle to extract the required amount of my precious red stuff to check if the meds I plough into my body everyday are doing their job.......it was an hour and a half wait and took 2 attempts to stab the right place.
This afternoon I had the honour to talk to a group of lovely people at Arthritis Research UK about my experiences of living with arthritis. I take my time getting there in the hustle and bustle of London so not to use all my spoons beforehand. The group is friendly and welcoming an I run through my presentation. I had forgotten some of the photos which had been used and keep having a chuckle. The talk goes well and there are plenty of questions asked after. It's important to me to do these talks, raise awareness of arthritis and other invisible illnesses to break down barriers and misconceptions. It's charities like ARUK that give people like me hope for the future through their research and support.
Heading home it is bitterly cold and I am fast running out of spoons. Pain and fatigue are encompassing my body. A voice comes over the tannoy speaking in a language incomprehensible which, when translated by the frustrated lady standing on platform 3 of Mile End station says the glorious District Line has severe delays.........deep deep joy.
I decide, for my own sanity and safety, to step back from the barging hoards of non-smiling lemmings trying to make their way home from the rat race. Eventually a tube arrives that I can manoeuvre my stiffening body on to. The London Underground is not fully accessible for disabled people and the challenges faced by people of limited mobility blur into insignificance in comparison to the cost of upgrading the whole of the underground network.
Doing the talks and raising awareness for invisible illnesses including arthritis has shown me how much I have achieved despite the challenges I face. I continue to play the hand I have been dealt. I like to think I am a positive person......I don't moan continuously about how unfair this all is and not constantly questioning "why me?" I will continue to support those who feel lost and consumed by these challenges because it gives me purpose and I am proof that because my life has changed in ways I never dreamt of, it doesn't mean my life is over.
Until next time......Use your spoons wisely and keep pain free xxxx
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