I'm a member of the most amazing online support group. The members have literally picked me up from the darkest depths of despair, through tests, diagnosis', hospital admissions and operations. They have also been there in joyous times and provided much laughter. A fabulous part of being a member of this group is the ability to meet up with fellow members. People that understand, "get me" and don't stare at the sheer wonkiness of wheelchairs, crutches, walking sticks, special cutlery and splinted joints. Today was one such day.
When Wonkies meet there will be gentle hugs of epic proportions. Laughter where tears of happiness not pain roll down our cheeks from our eyes, a complete understanding of the challenges faced by a body fighting RA. No judging or staring. Together we are normal, Wonky Normal.
Thank you once again to the Wonkies for love, kindness, support, understanding and laughter.
Every person battling or caring for someone with an invisible illness like Rheumatoid Arthritis needs to find an amazing support group you'll find friends for life that become family.
Friday, 13 October 2017
Thursday, 12 October 2017
World Arthritis Day, Live it 24/7 365
Today is World Arthritis Day. 12th October. For me it's the same as 11th October and 13th October will be the same. Like many, I live with arthritis 24/7 365 days a year. Today started pretty much like every other day. I'm awake long before the alarm has gone off for the kids to get up and out to school. My joints are as stiff as the Tin Man from Oz who hasn't been oiled for years and I have a searing pain in my back, hips and neck (other joints are joining the party but haven't woken up yet) I'm stuck on my back unable to move just like a tortoise flipped over onto its shell. It means I've started my day 1) in pain 2) tired 3) frustrated 4) did I mention pain?
Thankfully my lovely hubby gently helps by manoeuvring my legs and lifting me up to a seated position to get my baring's and stop the room from spinning (its like having a hangover without any of the fun and alcohol the night before) he then lifts me to a standing position and gives me my sticks. I'm finally up but by no means ready to face the day. This is just the first part of my daily routine followed by medications, help washing and dressing and giving the kids a kiss as they head off to school for the day leaving me alone with my thoughts, frustrations, loneliness and cats.
Here is a short video I did a couple of years ago about living with arthritis https://www.youtube.com/watch?v=E7vPJGjMzAo
Having any Invisible illness (I have a few...not greedy just a game of autoimmune bingo, you have one and they bring their friends and family to your body to party) is incredibly isolating. People look at me and tell me I look well, I'm too young to have arthritis .....tell that one to my 12 year old self 25 years ago!! I often get comments such as "my nan has arthritis" or "have you tried (insert magic cure)"
When you have a chronic illness or disability you find out who your true friends are. I find have to cancel plans due to pain and fatigue or hospital appointments. Some people don't understand that you are unable to meet up at a certain time at a certain place. Invitations to meet up or go places dry up and people stop calling. Real friends send a text to say "how are you?" or "I know you don't feel great at the moment, do you need anything?" Real friends don't take the "I'm Fine" reply at face value. I don't like to complain about the extent of my pain and struggles as I feel people don't understand. I'm self conscious and worry people are rolling their eyes at me or classing me as a moaner or someone after sympathy and pity. I know a lot of people battling chronic pain conditions feel the same so we put on the mask and smile and say "I'm Fine" but we're not fine.
A few months ago I took part in a video for Arthritis Research UK please have a watch and share. Here's the link https://www.youtube.com/watch?v=bWS6cvxF280
So this World Arthritis Day, spare a thought for the children fighting for some sort of normality and childhood, the younger people wanting a career, the older people struggling, you see the many forms of arthritis (there are about 200) don't discriminate on age, race or gender. It can and does affect anyone of an age. Its frustrating, isolating, painful.
Thankfully my lovely hubby gently helps by manoeuvring my legs and lifting me up to a seated position to get my baring's and stop the room from spinning (its like having a hangover without any of the fun and alcohol the night before) he then lifts me to a standing position and gives me my sticks. I'm finally up but by no means ready to face the day. This is just the first part of my daily routine followed by medications, help washing and dressing and giving the kids a kiss as they head off to school for the day leaving me alone with my thoughts, frustrations, loneliness and cats.
Here is a short video I did a couple of years ago about living with arthritis https://www.youtube.com/watch?v=E7vPJGjMzAo
Having any Invisible illness (I have a few...not greedy just a game of autoimmune bingo, you have one and they bring their friends and family to your body to party) is incredibly isolating. People look at me and tell me I look well, I'm too young to have arthritis .....tell that one to my 12 year old self 25 years ago!! I often get comments such as "my nan has arthritis" or "have you tried (insert magic cure)"
When you have a chronic illness or disability you find out who your true friends are. I find have to cancel plans due to pain and fatigue or hospital appointments. Some people don't understand that you are unable to meet up at a certain time at a certain place. Invitations to meet up or go places dry up and people stop calling. Real friends send a text to say "how are you?" or "I know you don't feel great at the moment, do you need anything?" Real friends don't take the "I'm Fine" reply at face value. I don't like to complain about the extent of my pain and struggles as I feel people don't understand. I'm self conscious and worry people are rolling their eyes at me or classing me as a moaner or someone after sympathy and pity. I know a lot of people battling chronic pain conditions feel the same so we put on the mask and smile and say "I'm Fine" but we're not fine.
A few months ago I took part in a video for Arthritis Research UK please have a watch and share. Here's the link https://www.youtube.com/watch?v=bWS6cvxF280
So this World Arthritis Day, spare a thought for the children fighting for some sort of normality and childhood, the younger people wanting a career, the older people struggling, you see the many forms of arthritis (there are about 200) don't discriminate on age, race or gender. It can and does affect anyone of an age. Its frustrating, isolating, painful.
Friday, 8 September 2017
Patient Transport, Frustrations and Cancellations.
I don't know about you but I need to psych myself up for certain appointments and procedures. Today was one of those days. I was due to have an arthrogram of my hip (where they guide the mother of all needles into the joint space guided by x-ray to inject dye) followed by an MRI of my hip and lumbar/sacral spine. The needle bit doesn't really bother me. I've got used to being a pin cushion over the years. It's the giant polo mint, louder than an industrial tumble drier, that's the problem. Laying on my back is incredibly painful and I end up being stuck like a tortoise rocking side to side on its shell with relentless stabbing muscle spasms. Fun eh?
I use patient transport. Its not ideal as journeys can be long as the drivers pick up a number of patients to take them to the hospital for their appointments. Usually, priority is given to transport patients as they could be late due to delays on the roads. Today I psyched myself up for the long journey to the specialist orthopaedic hospital by ambulance. My patch that delivers slow release pain relief is removed as they can't be worn in the giant polo which means my pain levels are increasing like the raising tide. The time that the ambulance is due comes and goes. A call to the booking line informs me that there is traffic but they are on the way and they will call the hospital to explain.
Eventually the ambulance arrives leaving 40 minutes to get all the way round the glorious M25 (you and I both know that it would take a minor miracle to make my appointment) Before I am wheeled on board I use the initiative to ask if my procedure is actually going to go ahead as we don't stand a hope in the proverbial hot place of getting there on time. Yep! You've guessed it, the appointment is cancelled. This is actually the second time this appointment has been cancelled....the first time because of staffing issues at the hospital and this time because transport are unable to transport.
A bit of digging and me losing my cool with tears stinging my face, I find that the first crew were assigned in the morning but had mechanical issues, a second crew were assigned but I have no idea why they couldn't make it, the third crew were dispatched from Stanmore at 1:15pm when I was supposed to be picked up at 1.30pm. Even if Superman were driving he would have had great difficulty in doing the usual 1 hour drive in 15 minutes. When I spoke to x-ray the appointments lady spoke to me in the most condescending tone implying that I was less than intelligent. I've actually had this procedure done before so I pretty much know the running order. I was so frustrated and upset that I ended up hanging up the phone call when they said that they would call Monday with an appointment but couldn't guarantee I wouldn't have an other 5-6 week wait.
I compose myself, put my big girl pants on and try and call the switchboard number to try and speak to PALS (patient advice and liaison service) to try and work out a way forward. The call just rang out. At my wits end I resorted to social media and a tweet to the hospital meant a response in minutes. Why is it that you get absolutely nowhere until you use a public platform? My lengthy complaint is now in the hands of PALs although they can't guarantee I won't have another 5-6 week wait (will bring the length of time to 4 months wait for an arthrogram and MRI) They will be contacting me on Monday morning before I head off to Westminster for a Parliamentary Reception to talk about my experiences of living with arthritis and the challenges I face......ironic.
I'm now have the cast of Stomp rehearsing in my head and a whole set of joint screaming in pain. Time for a blankie fort, cuppa and snuggles.
I use patient transport. Its not ideal as journeys can be long as the drivers pick up a number of patients to take them to the hospital for their appointments. Usually, priority is given to transport patients as they could be late due to delays on the roads. Today I psyched myself up for the long journey to the specialist orthopaedic hospital by ambulance. My patch that delivers slow release pain relief is removed as they can't be worn in the giant polo which means my pain levels are increasing like the raising tide. The time that the ambulance is due comes and goes. A call to the booking line informs me that there is traffic but they are on the way and they will call the hospital to explain.
Eventually the ambulance arrives leaving 40 minutes to get all the way round the glorious M25 (you and I both know that it would take a minor miracle to make my appointment) Before I am wheeled on board I use the initiative to ask if my procedure is actually going to go ahead as we don't stand a hope in the proverbial hot place of getting there on time. Yep! You've guessed it, the appointment is cancelled. This is actually the second time this appointment has been cancelled....the first time because of staffing issues at the hospital and this time because transport are unable to transport.
A bit of digging and me losing my cool with tears stinging my face, I find that the first crew were assigned in the morning but had mechanical issues, a second crew were assigned but I have no idea why they couldn't make it, the third crew were dispatched from Stanmore at 1:15pm when I was supposed to be picked up at 1.30pm. Even if Superman were driving he would have had great difficulty in doing the usual 1 hour drive in 15 minutes. When I spoke to x-ray the appointments lady spoke to me in the most condescending tone implying that I was less than intelligent. I've actually had this procedure done before so I pretty much know the running order. I was so frustrated and upset that I ended up hanging up the phone call when they said that they would call Monday with an appointment but couldn't guarantee I wouldn't have an other 5-6 week wait.
I compose myself, put my big girl pants on and try and call the switchboard number to try and speak to PALS (patient advice and liaison service) to try and work out a way forward. The call just rang out. At my wits end I resorted to social media and a tweet to the hospital meant a response in minutes. Why is it that you get absolutely nowhere until you use a public platform? My lengthy complaint is now in the hands of PALs although they can't guarantee I won't have another 5-6 week wait (will bring the length of time to 4 months wait for an arthrogram and MRI) They will be contacting me on Monday morning before I head off to Westminster for a Parliamentary Reception to talk about my experiences of living with arthritis and the challenges I face......ironic.
I'm now have the cast of Stomp rehearsing in my head and a whole set of joint screaming in pain. Time for a blankie fort, cuppa and snuggles.
Saturday, 2 September 2017
A Summer with Arthur
As the summer holidays are drawing to a close I've taken time to reflect on how the holidays have been and how Arthur has impacted what we do as a family.
I would like to say that the pest that lives in my body which goes by the name Arthur (or rheumatoid arthritis psoriatic arthritis oosteoarthritis to be precise ) has not had any impact on family life but I would be lying.
To be honest, there have been some horrendously painful days, days spent in a fog of fatigue and pain relief, days of subluxing joints, days with nausea, days spent at hospital appointments and days wondering where bruises have come from and why does having fun result in days of pain and rest.
There have also been some fantastic days spent with family and wonderful friends. The purple chariot has taken me on some fantastic but challenging adventures. The first one was a trip to the London Acquarium. London underground is not fully accessible so careful planning and consideration needs to be made. Unfortunately our day was not a fun as it should be because of the attitude caused by lack of training and awareness by one member of the aquariums staff. One member of our group is autistic and the aquarium poses various challenges for anyone but more so for our 4 year old friend. To be accosted for sitting down out of the way so he can have a drink and a minute to find his barings before walking through a crowded tunnel was not fun. To be accused of picnicking and the member of staff not to listen is not fun. Not all disabilities are visible.
While wheeling round the aquarium looking at the fishes and enjoying the day one woman actually stepped over me to get to a tank and someone else physically moved me out of the way. They pushed my chair! ! I mean what the actual hens teeth is all that about? Talk about making me feel 1) invisible and 2) a second class citizen. Needless to say I commented rather loudly much to the amusement of my 10 year old.
There have been some great trips. One was to the Natural History Museum and the V&A. The staff were fantastic and made the day easier by explaining where lift access is and inviting us to skip the long queue to enter the museum.
I also have a wonderful powerchair which has enabled me to go on family walks to the park, into town for a coffee and wheel along the pavement holding my hubby's or my children's hands. My new independence was made possible by some amazing friends and their fundraising. The ability to be able to go somewhere without the risk of falling or having to go home due to pain is very liberating.
Most people expect someone with arthritis to be older. Well I am getting older. This summer I celebrated my 37th birthday making my time with Arthur at least 25 years. At the beginning of the holidays myself and my family recorded a short film for Arthritis Research UK as part of their new campaign about how arthritis can be an invisible illness. We were honoured to be part of the film and hope it raises much needed awareness. You can watch the film by clicking the link
https://youtu.be/bWS6cvxF280
This summer has been a mixed bag but one that I hope we have been able to make good and happy memories with our children
Friday, 25 August 2017
Bingo! A game of multiplying conditions
Have you ever wanted to shout BINGO when your consultant/doctor/physio adds another condition or problem to your ever increasing list? My new physioterrorist informed me with a smile on her face that I have an "anterior facing pelvis" to which I smiled and replied "I'll add it to my list". You see when you have one autoimmune condition you seem to keep collecting them as they bring their friends and family. Yes I'm aware that my "anterior facing pelvis" is not an autoimmune condition but it's certainly not helped by my non co-operative rheumatoid arthritis.
I often think that I'd like an easy day, one where I wake up pain free, jump out of bed with no stiffness, that all my joints stayed in place and arthritis was just an old persons challenge. It's nice to dream isn't it?!
Despite my challenges I have been blessed to have met some wonderful people and to be involved with a fabulous charity Arthritis Research UK. I recently took part in one of their campaigns. I was filmed talking about how arthritis affects all aspects of my life and affects my family. It never gets easier talking about needing help with personal things and feeling as though life is passing by at a pace I am unable to keep up with but I have a huge sense of achievement to think that my story may help others feel as though they're not alone.
I write this blog after 18 months since my last one. I'm sat in the reception of an orthopaedic hospital whose air con is set to Arctic blizzard while I wait for patient transport to take me home following my physio....with a sore hip as the over enthusiastic physio subluxated it despite my warnings of "if you move it that way it will......OUCH" I've much to update you on with my journey with Arthur and my new wheels 😀
I often think that I'd like an easy day, one where I wake up pain free, jump out of bed with no stiffness, that all my joints stayed in place and arthritis was just an old persons challenge. It's nice to dream isn't it?!
Despite my challenges I have been blessed to have met some wonderful people and to be involved with a fabulous charity Arthritis Research UK. I recently took part in one of their campaigns. I was filmed talking about how arthritis affects all aspects of my life and affects my family. It never gets easier talking about needing help with personal things and feeling as though life is passing by at a pace I am unable to keep up with but I have a huge sense of achievement to think that my story may help others feel as though they're not alone.
I write this blog after 18 months since my last one. I'm sat in the reception of an orthopaedic hospital whose air con is set to Arctic blizzard while I wait for patient transport to take me home following my physio....with a sore hip as the over enthusiastic physio subluxated it despite my warnings of "if you move it that way it will......OUCH" I've much to update you on with my journey with Arthur and my new wheels 😀
Wednesday, 13 January 2016
Parliament, MP's, Lobby and Benefits
Many disabled people are unable to work for a variety of reasons and unfortunately have to rely on the benefit system. It's NOT something we choose to do. It's NOT something we want to do. To be honest with you it's horrible, soul destroying, worrying and makes you feel as though you are at the bottom of the social pile. Some people assume that we are scroungers and can't be bothered to work. Let me tell you a little bit about myself. I am an educated woman. I am degree and post graduate level educated. I had a very good job in the financial services industry. I earned money that enabled myself and my family to live comfortably and not worry about where the funds were coming from to pay the bills or to pay for a holiday.
I've always had problems with my joints. My first surgery was when I was 12 years old. I have Rheumatoid Arthritis, Psoriatic Arthritis, Osteoarthritis, Fibromyalgia, Sjogrens Syndrome and Ehlers Danlos Syndrome (HMS) that's just the tip of the iceberg. Unfortunately things progressed to the point where I couldn't maintain a working life. The amount of hospital appointments I need to attend, the flare ups, the fatigue and the pain got to the point where I was signed off from work indefinitely and my employer could no longer support me and keep my role available. I was dismissed on medical grounds in March 2014 leaving me reliant on the benefits system.
I've spent the last 3-4 years campaigning for the awareness of invisible illnesses and conditions to be recognised, for sufferers and carers to have support and for the stigma to be reduced or removed. I've been lucky to part of a number of campaigns for Arthritis Research UK which is a fantastic charity. Today was one of those days that the charity asked me to be part of.
We arrived at the Houses of Parliament on a chilly winters day for the mass lobby of parliament for the #benefitslobby. I don't know about you but the cold really affects my arthritis and my joints dislike it hugely.
We had an appointment time secured to speak to my MP Dame Angela Watkinson to discuss the Welfare Reform and Work Bill where the government are planning to on reducing the benefits that support many disabled people like myself. I'm not going to lie, I was nervous. I know how much this means to people and I felt that a lot was riding on how I was able to communicate with my MP. The subject is one close to home and I wanted to do my best not only for the charity but also for people like myself.
Westminster Hall is an impressive hall steeped in history.....and cold. The Normans didn't install central heating way back when :-) We found a seat round a table and waited for the MP to arrive.
Dame Angela Watkinson listened closely to what the representatives from Arthritis Research UK had to say, statistics were given...."30% of families with a disabled member are in poverty"......that's 30% too much! It really is shocking. Then it was my turn.....I tried my best to explain how reducing disability benefits and ESA in particular would leave people like myself worse off. That the money helps pay for transport costs to and from the multitude of hospital appointments we have to attend. That if the benefit was reduced we would struggle to pay for council tax, utility bills and food. I emphasised that we do not choose to live like this and we are in this predicament through no fault of our own. I would love to work but my conditions don't allow it. I know that I will be paying for this day tomorrow and the next day. Tonight and tomorrow I will need to rest to get over being part of something important today. As I am writing this the fatigue is kicking in and my joints are burning and yet on the outside I look 'well'.
When we arrived at the Houses of Parliament we are ushered through airport style security. The security personnel are kind and helpful but one asks "what have you done?" I explain that I have arthritis to which he replies "I'm sorry, have you tried copper bracelets?" I smiled, told him not to be sorry as its not something I can help, it is what it is, and yes I had tried copper bracelets. That's the thing with chronic illnesses, there is always someone who has that magic 'cure'. They are well meaning however it can wear a bit thin when it is something that continuously crops up in conversation.
Today has had a positive outcome. Dame Angela Watkinson has agreed to look further into the Welfare Reform and Work Bill, my story has hopefully made an impact. Our MP's only see the reports and figures. It is important for them to hear real life stories of how their constituent's are impacted by such proposed changes. It makes it more 'real' we stop being statistics and start being people. I really felt that I was listened to and my opinion mattered. That is what we want from our MP's.
With Dame Angela Watkinson MP
With Arthritis Research UK Representative
Today has been one of those days that I will remember for a long time to come. Its a day that I can say I am truly proud to have been a part of and I hope that I have been able to make a difference.
Follow The Invisible Challenge on Facebook https://www.facebook.com/TheInvisibleChallenge/
or join our new support group https://www.facebook.com/groups/952359964838840/
I've always had problems with my joints. My first surgery was when I was 12 years old. I have Rheumatoid Arthritis, Psoriatic Arthritis, Osteoarthritis, Fibromyalgia, Sjogrens Syndrome and Ehlers Danlos Syndrome (HMS) that's just the tip of the iceberg. Unfortunately things progressed to the point where I couldn't maintain a working life. The amount of hospital appointments I need to attend, the flare ups, the fatigue and the pain got to the point where I was signed off from work indefinitely and my employer could no longer support me and keep my role available. I was dismissed on medical grounds in March 2014 leaving me reliant on the benefits system.
I've spent the last 3-4 years campaigning for the awareness of invisible illnesses and conditions to be recognised, for sufferers and carers to have support and for the stigma to be reduced or removed. I've been lucky to part of a number of campaigns for Arthritis Research UK which is a fantastic charity. Today was one of those days that the charity asked me to be part of.
We arrived at the Houses of Parliament on a chilly winters day for the mass lobby of parliament for the #benefitslobby. I don't know about you but the cold really affects my arthritis and my joints dislike it hugely.
Westminster Hall is an impressive hall steeped in history.....and cold. The Normans didn't install central heating way back when :-) We found a seat round a table and waited for the MP to arrive.
Dame Angela Watkinson listened closely to what the representatives from Arthritis Research UK had to say, statistics were given...."30% of families with a disabled member are in poverty"......that's 30% too much! It really is shocking. Then it was my turn.....I tried my best to explain how reducing disability benefits and ESA in particular would leave people like myself worse off. That the money helps pay for transport costs to and from the multitude of hospital appointments we have to attend. That if the benefit was reduced we would struggle to pay for council tax, utility bills and food. I emphasised that we do not choose to live like this and we are in this predicament through no fault of our own. I would love to work but my conditions don't allow it. I know that I will be paying for this day tomorrow and the next day. Tonight and tomorrow I will need to rest to get over being part of something important today. As I am writing this the fatigue is kicking in and my joints are burning and yet on the outside I look 'well'.
When we arrived at the Houses of Parliament we are ushered through airport style security. The security personnel are kind and helpful but one asks "what have you done?" I explain that I have arthritis to which he replies "I'm sorry, have you tried copper bracelets?" I smiled, told him not to be sorry as its not something I can help, it is what it is, and yes I had tried copper bracelets. That's the thing with chronic illnesses, there is always someone who has that magic 'cure'. They are well meaning however it can wear a bit thin when it is something that continuously crops up in conversation.
Today has had a positive outcome. Dame Angela Watkinson has agreed to look further into the Welfare Reform and Work Bill, my story has hopefully made an impact. Our MP's only see the reports and figures. It is important for them to hear real life stories of how their constituent's are impacted by such proposed changes. It makes it more 'real' we stop being statistics and start being people. I really felt that I was listened to and my opinion mattered. That is what we want from our MP's.
With Dame Angela Watkinson MPWith Arthritis Research UK Representative
Today has been one of those days that I will remember for a long time to come. Its a day that I can say I am truly proud to have been a part of and I hope that I have been able to make a difference.
Follow The Invisible Challenge on Facebook https://www.facebook.com/TheInvisibleChallenge/
or join our new support group https://www.facebook.com/groups/952359964838840/
Monday, 17 August 2015
One Wish?
As I sit here riding out my methotrexate hang over I've just got off the telephone to a representative of Arthritis Research UK as I have been asked if I would like to help out with one of their up coming campaigns. I'm always honoured to take part and help out with this wonderful charity as their research gives people like myself hope for the future.
On the whole I am confident and 'ok' talking about my life, the way it has changed and how I 'cope'. One question floored me today, it was a simple question and one that may children are asked. It was " if you could have one wish, what would it be?" blimey! I felt so silly as I couldn't stop the tears falling from my eyes, tears of memories past and tears for memories that should have been made rolling down my dry pale cheeks. Luckily we were talking by phone so the lady couldn't see me but she knew as my voice cracked with my answer "to be pain free"
It sounds a simple wish but one that I fear can never be granted without the use of strong pain medications. Most people would probably wish for something like a lotto win or an expensive holiday in far flung places, but for me it would be to wake up without pain and stiffness. To walk without crutches or use a wheelchair. To have just one day without pain. It's difficult to remember a time when my body didn't ache beyond words, where joints weren't so stiff I felt my age instead of a old lady and where I didn't battle fatigue for just getting out of bed.
My life is not all doom and gloom and I certainly don't want pity from people. I have these challenges which most people who suffer with autoimmune conditions have but I am not prepared to sit back and not fight some resemblance of normality. Anyhooo.....what is normal anyway?!!!
So far I have survived the school summer jollies with the kids. We have had days out, had picnics, seen air shows, visited family, had meals out interspersed with days of rest and movie days sprawled on the sofa.
Today my new wheelchair has been delivered. I had a pang of sadness as it was wheeled through the door ready to be fitted another day. But then remembered this wheelchair will help me get out and about with less pain, enjoy more days with the family and prevent me from being stuck in the house.
I hope you are enjoying the summer months and are not in too much pain xxx
On the whole I am confident and 'ok' talking about my life, the way it has changed and how I 'cope'. One question floored me today, it was a simple question and one that may children are asked. It was " if you could have one wish, what would it be?" blimey! I felt so silly as I couldn't stop the tears falling from my eyes, tears of memories past and tears for memories that should have been made rolling down my dry pale cheeks. Luckily we were talking by phone so the lady couldn't see me but she knew as my voice cracked with my answer "to be pain free"
It sounds a simple wish but one that I fear can never be granted without the use of strong pain medications. Most people would probably wish for something like a lotto win or an expensive holiday in far flung places, but for me it would be to wake up without pain and stiffness. To walk without crutches or use a wheelchair. To have just one day without pain. It's difficult to remember a time when my body didn't ache beyond words, where joints weren't so stiff I felt my age instead of a old lady and where I didn't battle fatigue for just getting out of bed.
My life is not all doom and gloom and I certainly don't want pity from people. I have these challenges which most people who suffer with autoimmune conditions have but I am not prepared to sit back and not fight some resemblance of normality. Anyhooo.....what is normal anyway?!!!
So far I have survived the school summer jollies with the kids. We have had days out, had picnics, seen air shows, visited family, had meals out interspersed with days of rest and movie days sprawled on the sofa.
Today my new wheelchair has been delivered. I had a pang of sadness as it was wheeled through the door ready to be fitted another day. But then remembered this wheelchair will help me get out and about with less pain, enjoy more days with the family and prevent me from being stuck in the house.
I hope you are enjoying the summer months and are not in too much pain xxx
Subscribe to:
Posts (Atom)