We have just spent a Magical but exhausting and at times painful couple of days at Disneyland Paris. The trip was arranged by my daughters stage school who had the amazing experience of dancing on the stage at Videotropolis in Discovery Land.
We set of early to get to the coach pick up point in Barking. Laden with bags and suitcases, we made our way on public transport with the chariot and crutches. The children chatting excitedly about which ride they’ll go on and which characters they may see. The days leading up to the trip I was worried about the journey and how I would cope on the coach for an extended period of time. Luckily our coach was a luxury coach with better leg room and comfy seats but it was still hard going on my back and hips resulting in stiffness and pain. We had regular stops to stretch our legs and use the facilities.
After a restful nights sleep we headed to the park for the stage school dancers to do their tech run ahead of their performance. While this was going on I made my way to City Hall with my blue badge and a couple of friends to get a Green Pass which enables disabled people to jump to the beginning of the queues for rides and character meetings so you don’t have to stand for extended periods of time. This worked really well for us as we could be accompanied by 4 people. In our group there was 2 green passes which meant 10 people could be fast passed to the front of the queue. For anyone who has any form of disability from sensory to mobility the green pass is a massive help.
The girls danced like professionals and feedback given by many people including Disney staff was that their performance was one of the best they have had for a long time .
Tips for anyone with any mobility challenges are to pace yourself. Beware that people are not so aware of their surroundings and knock into you, cut across you. If you’re using a wheelchair you could get the occsssional bag in your face but please do not let other peoples ignorance’s marr your experience of Disneyland. There are points along the parade route and the illuminations at the end of the day for green pass holders to sit or stand so they have a good view. The busiest times where the crowds are the parades and the illuminations. Make sure you have someone with you.
When you travel as a large group you certainly find out who your friends are and who only really wants to know you because you have something they want/need or they need/want you to do something for them. Thank goodness for our little group. They kept me safe and sane. These last few days have really shown me who want to know me for me, appreciate the efforts I made in getting the girls ready doing their hairs, and those who pretty much used me. I started doing hair the night we arrived finishing just before midnight and started the following morning at 6.20am with stiff sore hands. I didn’t do all the hairs but I must have done 3/4 of the group. Walking round I heard a few underhand comments about being at to jump the queue and being one of the last back to the coach after the illuminations. I ended up using the wheelchair and cradled a 5 year old who had fallen asleep after an action packed day. Walking was painful, standing was painful, sitting was painful but it was all worth it because I got to see my daughter, sons and their friends make memories that will last a lifetime. I’ve survived on caffeine and painkillers. It’s going to take a week to recover.
I couldn’t have made it without my lovely hubby who is in pain himself and waiting to find out if he needs hip surgery. Also The Sarah’s, Lisa (my crip in crime ) Sue, Dee and the dancers in our group . You guys made the trip fantastic. Good company, support, laughter. Thank you for asking if I was ok, it means more than you know xxx
Thursday, 12 April 2018
Tuesday, 20 March 2018
Making a Home Safe
The long and drawn out process of applying for a Disability Funding Grant came to a satisfying close at the beginning of January. 16 months of assessments by my Occupational Therapist, form filling and obtaining quotes from builders and suppliers accumulated with a letter informing us that our application had finally been successful. It’s a weight off my mind knowing that we can now make the house safe for me to live in.
Just imagine struggling to do everyday tasks. Regular falls in the house and down the stairs, not being able to get my wheelchair out of the house without help and then your occupational therapist doing a revision assessment of the aids already put in place and informing you that your home, the house you have worked hard for, are raising your children in, is no longer safe for you. It practically broke me. Plunging me into a very low mood. Questioning whether to sell our house and move away to a more suitable home, perhaps bungalow in a cheaper area. My OT told us about the Disability Funding Grant that is available from the council to help disabled people make adjustments to their home. It’s a means tested grant and you need to be in receipt of certain benefits and/or have an income under a certain annual amount.
Originally we were applying to have a wet room installed so the shower was level access, a stair lift and a step lift installed but one of my children has chronic pain syndrome and finds relief from sitting in a warm bath. My children will always come first so we are looking at other options for the bathroom.
Mid February the stair lift is fitted. It took a few hours and has made a massive difference. It’s not the fastest of speeds of ascent rent and descent so there’s no chance of taking off and flying out the bathroom window. No more falling up and down the stairs 😄 No more injuries. I can’t tell you the relief! The cats are dubious about the contraption running up the side of the stairs and view it with an air of contempt.
Mid March brings the start of the outside ground work so the step lift can be fitted. Skips delivered, cars moved, building supplies delivered, concrete steps removed and a drop that feels as deep as the Grand Canyon appears at my front doorstep, and mud, lots of mud!! Due to the great abyss opening up at the front of the house it means I’m starting to suffer with h cabin fever. I can’t get out without help from the hubster and that’s going out the back through the garage. The builders are nice enough but the noise is driving me up the wall. I have no idea how they managed it but they kept tripping the fuses and the house alarm kept being triggered. Oh man I was relieved when hubby and kids came home. Tuesdays are never good as it’s methotrexate hangover day and all I want to do is curl up under a duvet and snuggle with the cats until the kids and hubby come home. Obviously that hasn’t happened today and I’m running on fumes. It will all be worth it in the end. I’ll be able to get my wheelchair in and out of the house without any help, struggles or problems. I’ll be safer as I can use my power chariot rather than my crutches and in theory I’ll have more independence. I can’t wait!
For anyone wondering how they could possibly afford the adjustments to their home to make is safer and more accessible I recommend applying for a Disability Funding Grant. Yes, it’s a drawn out process and is far from being a quick fix but it is worthwhile. I’m glad we applied. Here’s to less injuries, falls, struggles and challenges in my own home.
Just imagine struggling to do everyday tasks. Regular falls in the house and down the stairs, not being able to get my wheelchair out of the house without help and then your occupational therapist doing a revision assessment of the aids already put in place and informing you that your home, the house you have worked hard for, are raising your children in, is no longer safe for you. It practically broke me. Plunging me into a very low mood. Questioning whether to sell our house and move away to a more suitable home, perhaps bungalow in a cheaper area. My OT told us about the Disability Funding Grant that is available from the council to help disabled people make adjustments to their home. It’s a means tested grant and you need to be in receipt of certain benefits and/or have an income under a certain annual amount.
Originally we were applying to have a wet room installed so the shower was level access, a stair lift and a step lift installed but one of my children has chronic pain syndrome and finds relief from sitting in a warm bath. My children will always come first so we are looking at other options for the bathroom.
Mid February the stair lift is fitted. It took a few hours and has made a massive difference. It’s not the fastest of speeds of ascent rent and descent so there’s no chance of taking off and flying out the bathroom window. No more falling up and down the stairs 😄 No more injuries. I can’t tell you the relief! The cats are dubious about the contraption running up the side of the stairs and view it with an air of contempt.
Mid March brings the start of the outside ground work so the step lift can be fitted. Skips delivered, cars moved, building supplies delivered, concrete steps removed and a drop that feels as deep as the Grand Canyon appears at my front doorstep, and mud, lots of mud!! Due to the great abyss opening up at the front of the house it means I’m starting to suffer with h cabin fever. I can’t get out without help from the hubster and that’s going out the back through the garage. The builders are nice enough but the noise is driving me up the wall. I have no idea how they managed it but they kept tripping the fuses and the house alarm kept being triggered. Oh man I was relieved when hubby and kids came home. Tuesdays are never good as it’s methotrexate hangover day and all I want to do is curl up under a duvet and snuggle with the cats until the kids and hubby come home. Obviously that hasn’t happened today and I’m running on fumes. It will all be worth it in the end. I’ll be able to get my wheelchair in and out of the house without any help, struggles or problems. I’ll be safer as I can use my power chariot rather than my crutches and in theory I’ll have more independence. I can’t wait!
For anyone wondering how they could possibly afford the adjustments to their home to make is safer and more accessible I recommend applying for a Disability Funding Grant. Yes, it’s a drawn out process and is far from being a quick fix but it is worthwhile. I’m glad we applied. Here’s to less injuries, falls, struggles and challenges in my own home.
Monday, 12 March 2018
Not A Lot To Ask?
We all do it. We all push our bodies to the limit but for those who have the challenges of a chronic illness, autoimmune diseases, chronic pain it takes days to recover from a day or possibly 2 of enjoyment. Where someone who isn't wonky and creaky can go out all day and then have an enjoyable evening with friends and family, goes to bed of a night and if they are really unlucky wakes up the next morning with a hangover. For others who have rheumatoid arthritis or fibromyalgia they have broken sleep due to pain, wake up still tired, stiff and in pain.
I write this edition wrapped up in the duvet, propped up with pillows, with a tear stained face, willing the medication to do its magic.
I woke this morning, pretty much like every morning, stiff and in considerable pain. I couldn't bare for my lovely hubby to touch me. I know he feels rejected and that makes me feel useless, a failure as a wife and a lover. He says he understands and he loves me, so at my really low points I have to cling to that and hope that its true.
Over the last couple of days I have pushed my body too far, sat on plastic seats where I really should have used my wheels, and survived off cups of tea. I used my crutches because I know space is at a premium at dance competitions. I wanted, and succeeded in supporting my daughter and her dance school at this weekend's dance festival. Moo only had 3 dances over the weekend and we could have arrived, danced and gone home, but we arrived early both days and stayed later so we could watch and support her team mates. By the second day I'm shaking, feeling sick, running hot and cold and I'm short tempered due to pain and frustration. I really should be able to support my daughter without all this shit. The night before I have taken oramorph on top on my usual concoction of pain relief.
Any dance mum will be able to relate to the rush of getting hair and make up done prior to a performance. My hands were shaking with pain and stiff with arthritis. My frustration with myself is mounting up and I know my daughter is getting nervous and her behaviour reflects that with her attitude and the climbing on me etc and I snap. I shouldn't have done, it's not her fault. She knows mum hurts, she's known nothing else, its her life....mum struggles, mums in pain, mum cant do things other mums can do. I try to hide it as there are very few mums who understand and the person I would have hoped to understand didn't. Sometimes I question friendships but its more down to the situation and people not being able to see past the end of their noses wrapped up in their own little bubble....that's fine too. (there are a couple as they battle the same struggles and its nice to know there is someone who knows exactly what its like, but they aren't there this weekend) Another mum sees I'm struggling and offers to do her daughters hair, she has a kind soul and heart and I am thankful someone can actually see through the façade I put up to prevent people judging me.
You see, I want to do it all, I want to have fun, take part and enjoy myself. I will my body to behave, not hurt, not be stiff, for fatigue never to happen. I don't want to feel like this.....who does? I pump my tired body with horrendous drugs, like other people who are hobbling this wonky path or RA and autoimmune diseases, with the glimmer of hope that it will beat the condition into submission and that I can lead a normal life.....whatever that is. I know people who have conditions but refuse to take the medication, which is up to them, or hold on to the prescription for weeks not getting it fulfilled, probably out of fear. The thing is you have to help yourself. Listen to the doctors who are caring for you. If you don't try the medication you won't know if it will help. If it doesn't work for whatever reason you know you have tried it and you can discuss with your doctor or medical professional what is next on the list that might help. Its all trial an error. For some the first medication helps. For others they are on a long road. I will literally try anything (apart from avocado and turmeric baths....:-) ) Tomorrow the healthcare company will deliver the 2nd anti TNF therapy I have tried. The first was on a clinical trial. A couple of years ago I took part in a clinical trial....I was desperate. In pain and at an all time low. The trial was good but came to an end. It doesn't bother me that I will have to inject myself twice a week....Once with a low dose chemotherapy drug that makes me sick and exhausted, the second with the anti TNF to hopefully kick RA's butt. My immune system is low and I'm susceptible to coughs, colds and infections, but I will do absolutely anything that means I can spend time with my family and not resting in bed or sleeping on the sofa. I want to go to the park, go shopping, go out socialising with friends, cuddle my kids before they get too old for cuddles, be a proper wife and mum. .....its not a lot to ask for, is it?
People don't understand or realise the isolation of living with a chronic illness. The frustrations, and the lows. People who you thought were friends stop calling, texting or inviting you out. We often support people around us, not putting ourselves first or even second. Always asking how others are but rarely getting a message saying "how are you?" or "I know you're struggling, can I help?", or "do you want some company?" Life moves on. I am incredibly thankful for the people I have in my life. I know I don't tell them enough that I love them and value them but they all know who they are.
I'm going to end this on a positive note.
My little Dancing Queen came 1st in her Acro Quartet. Seeing her dance, lighting up the stage with her friends made my day, made the hard work worth it and made my Mothers Day.
I write this edition wrapped up in the duvet, propped up with pillows, with a tear stained face, willing the medication to do its magic.
I woke this morning, pretty much like every morning, stiff and in considerable pain. I couldn't bare for my lovely hubby to touch me. I know he feels rejected and that makes me feel useless, a failure as a wife and a lover. He says he understands and he loves me, so at my really low points I have to cling to that and hope that its true.
Over the last couple of days I have pushed my body too far, sat on plastic seats where I really should have used my wheels, and survived off cups of tea. I used my crutches because I know space is at a premium at dance competitions. I wanted, and succeeded in supporting my daughter and her dance school at this weekend's dance festival. Moo only had 3 dances over the weekend and we could have arrived, danced and gone home, but we arrived early both days and stayed later so we could watch and support her team mates. By the second day I'm shaking, feeling sick, running hot and cold and I'm short tempered due to pain and frustration. I really should be able to support my daughter without all this shit. The night before I have taken oramorph on top on my usual concoction of pain relief.
Any dance mum will be able to relate to the rush of getting hair and make up done prior to a performance. My hands were shaking with pain and stiff with arthritis. My frustration with myself is mounting up and I know my daughter is getting nervous and her behaviour reflects that with her attitude and the climbing on me etc and I snap. I shouldn't have done, it's not her fault. She knows mum hurts, she's known nothing else, its her life....mum struggles, mums in pain, mum cant do things other mums can do. I try to hide it as there are very few mums who understand and the person I would have hoped to understand didn't. Sometimes I question friendships but its more down to the situation and people not being able to see past the end of their noses wrapped up in their own little bubble....that's fine too. (there are a couple as they battle the same struggles and its nice to know there is someone who knows exactly what its like, but they aren't there this weekend) Another mum sees I'm struggling and offers to do her daughters hair, she has a kind soul and heart and I am thankful someone can actually see through the façade I put up to prevent people judging me.
You see, I want to do it all, I want to have fun, take part and enjoy myself. I will my body to behave, not hurt, not be stiff, for fatigue never to happen. I don't want to feel like this.....who does? I pump my tired body with horrendous drugs, like other people who are hobbling this wonky path or RA and autoimmune diseases, with the glimmer of hope that it will beat the condition into submission and that I can lead a normal life.....whatever that is. I know people who have conditions but refuse to take the medication, which is up to them, or hold on to the prescription for weeks not getting it fulfilled, probably out of fear. The thing is you have to help yourself. Listen to the doctors who are caring for you. If you don't try the medication you won't know if it will help. If it doesn't work for whatever reason you know you have tried it and you can discuss with your doctor or medical professional what is next on the list that might help. Its all trial an error. For some the first medication helps. For others they are on a long road. I will literally try anything (apart from avocado and turmeric baths....:-) ) Tomorrow the healthcare company will deliver the 2nd anti TNF therapy I have tried. The first was on a clinical trial. A couple of years ago I took part in a clinical trial....I was desperate. In pain and at an all time low. The trial was good but came to an end. It doesn't bother me that I will have to inject myself twice a week....Once with a low dose chemotherapy drug that makes me sick and exhausted, the second with the anti TNF to hopefully kick RA's butt. My immune system is low and I'm susceptible to coughs, colds and infections, but I will do absolutely anything that means I can spend time with my family and not resting in bed or sleeping on the sofa. I want to go to the park, go shopping, go out socialising with friends, cuddle my kids before they get too old for cuddles, be a proper wife and mum. .....its not a lot to ask for, is it?
People don't understand or realise the isolation of living with a chronic illness. The frustrations, and the lows. People who you thought were friends stop calling, texting or inviting you out. We often support people around us, not putting ourselves first or even second. Always asking how others are but rarely getting a message saying "how are you?" or "I know you're struggling, can I help?", or "do you want some company?" Life moves on. I am incredibly thankful for the people I have in my life. I know I don't tell them enough that I love them and value them but they all know who they are.
I'm going to end this on a positive note.
My little Dancing Queen came 1st in her Acro Quartet. Seeing her dance, lighting up the stage with her friends made my day, made the hard work worth it and made my Mothers Day.
Sunday, 28 January 2018
Good Advice? or Bad Advice? That is the Question
As many of you know, I have dedicated my life to raising awarenss of invisible illness and disabilities as well as being a support to those who are battling them and the challenges we face because of them.
Social media can be a fantastc source of information and support. We can find support from people from around the world who are going through similar experiences. We can find information and advice from medications, diagnosis' to mobility aids and support groups. Many of us who struggle with the loneliness that comes along with having a chronic illness find friendships within online communities and support groups.
I have been using various social media platforms to raise awareness. Yesterday I received a tweet off the back of an awarenss post I had done on Chronic Pain. This tweet suggested that the source/cause of my pain is in my head and not taking my emotions for granted will cure me.
I was completely gobsmacked and speachless (something that is a rare occurrence I might add) The disabled and chronic pain community jumped on this, quite rightly so. People asking for clarification and calling him out on his qualifications and experience to make such sweeping statements.
My concern, and that of those who commented on the tweet, is that a vulnerable person who is at the end of their tether, or unsure of where to turn, or just starting out finding a diagnosis or treatment plan may read these claims and either stop medication that has already been started, not seek the relevant medical advice from qualified medic's, or believe that all forms of chronic pain or illness can be cured by having a positive mental attitude.
Now I do appreciate that have a positive stance in life goes a long way and does help with keeping upbeat. I do know that stress can exacerbate flare ups ofor conditions such as rheumatoid arthritis and fibromyalgia BUT it is NOT the main cause of these conditions. RA is an autoimmune condition where my immune system is attacking various parts of my body. I do try to keep my mental health healthy, which isn't always easy as depression often accompanies chronic pain, disabilities and illness. I do practice mindfulness and meditation and I'd like to think I'm a pretty positive person but I am aware that my pain is not in my head and it is not caused by my emotions.
I would love for people like this osteopath, if that is indeed his qualifications, to spend just one day in my body. Experience the challenges I face on a daily basis from waking up to going to sleep...if there is sleep. I saw a tweet from him replying to a lady who's hips sublux/dislocate telling her that hips "don't pop out just walking it all in the head". You can imagine how this made the lady feel and how I felt at the comment as my hips go out more than I do!
The moral of the story is; not all advice is good advice, not all information is correct, and not everyone sitting behind a keyboard has good intentions.
A Big THANK YOU to the online Wonky and Chronic Pain community for your continued support.
Social media can be a fantastc source of information and support. We can find support from people from around the world who are going through similar experiences. We can find information and advice from medications, diagnosis' to mobility aids and support groups. Many of us who struggle with the loneliness that comes along with having a chronic illness find friendships within online communities and support groups.
I have been using various social media platforms to raise awareness. Yesterday I received a tweet off the back of an awarenss post I had done on Chronic Pain. This tweet suggested that the source/cause of my pain is in my head and not taking my emotions for granted will cure me.
I was completely gobsmacked and speachless (something that is a rare occurrence I might add) The disabled and chronic pain community jumped on this, quite rightly so. People asking for clarification and calling him out on his qualifications and experience to make such sweeping statements.
My concern, and that of those who commented on the tweet, is that a vulnerable person who is at the end of their tether, or unsure of where to turn, or just starting out finding a diagnosis or treatment plan may read these claims and either stop medication that has already been started, not seek the relevant medical advice from qualified medic's, or believe that all forms of chronic pain or illness can be cured by having a positive mental attitude.
Now I do appreciate that have a positive stance in life goes a long way and does help with keeping upbeat. I do know that stress can exacerbate flare ups ofor conditions such as rheumatoid arthritis and fibromyalgia BUT it is NOT the main cause of these conditions. RA is an autoimmune condition where my immune system is attacking various parts of my body. I do try to keep my mental health healthy, which isn't always easy as depression often accompanies chronic pain, disabilities and illness. I do practice mindfulness and meditation and I'd like to think I'm a pretty positive person but I am aware that my pain is not in my head and it is not caused by my emotions.
I would love for people like this osteopath, if that is indeed his qualifications, to spend just one day in my body. Experience the challenges I face on a daily basis from waking up to going to sleep...if there is sleep. I saw a tweet from him replying to a lady who's hips sublux/dislocate telling her that hips "don't pop out just walking it all in the head". You can imagine how this made the lady feel and how I felt at the comment as my hips go out more than I do!
The moral of the story is; not all advice is good advice, not all information is correct, and not everyone sitting behind a keyboard has good intentions.
A Big THANK YOU to the online Wonky and Chronic Pain community for your continued support.
Thursday, 11 January 2018
Surviving on Disability Benefit.
I know many of you can relate to this. We work hard, have a good job, set up home, get married and have a family, live happily ever after......well it happens in the fairy tales doesn't it? Well my fairy tale was going pretty well until Arthur decided to up his game and I lost my job due to medical grounds and I was forced to claim disability benefit. It was the most soul destroying time of my life. I went from being a wife, a mother and the main income earner. We had our worries like everyone has but we got by OK.
Scroll forward a few years. Hubby has a job as a teaching assistant. It's not a highly paid job, in fact it doesn't bring in enough to reach the first income tax bracket but we make do. It amazing what you can do without. Priorities are re-evaluated etc. Our children always come first but we can no longer afford Clarks shoes and make do with supermarket shoes. They are cheap and they don't last but when 3 pairs come in at about £45-£50 instead of £150 it's a no brainer. So how do you think I feel when my beautiful daughter comes home from school upset because the head teacher has told her off for wearing black boots to school? 1) heart broken because she has done nothing wrong and she didn't ask for her school shoes to fall apart in the last week of the Christmas term. 2) annoyed (that's putting it mildly) as she was told "you'd better get some quickly " when she explained she didn't have any school shoes.
Christmas came which was an added stress and we hado the gas and electric bill to pay as well as the usual mortgage , council tax and food bills. My daughters school shoes are on the list to be replaced when my disability benefit/child benefit goes in at the end of the month. Her boots are a) black b) smart and more importantly c) do not have holes in.
Way to go school! You made me feel a failure as a parent and my daughter upset and more worried about money than she already was
Scroll forward a few years. Hubby has a job as a teaching assistant. It's not a highly paid job, in fact it doesn't bring in enough to reach the first income tax bracket but we make do. It amazing what you can do without. Priorities are re-evaluated etc. Our children always come first but we can no longer afford Clarks shoes and make do with supermarket shoes. They are cheap and they don't last but when 3 pairs come in at about £45-£50 instead of £150 it's a no brainer. So how do you think I feel when my beautiful daughter comes home from school upset because the head teacher has told her off for wearing black boots to school? 1) heart broken because she has done nothing wrong and she didn't ask for her school shoes to fall apart in the last week of the Christmas term. 2) annoyed (that's putting it mildly) as she was told "you'd better get some quickly " when she explained she didn't have any school shoes.
Christmas came which was an added stress and we hado the gas and electric bill to pay as well as the usual mortgage , council tax and food bills. My daughters school shoes are on the list to be replaced when my disability benefit/child benefit goes in at the end of the month. Her boots are a) black b) smart and more importantly c) do not have holes in.
Way to go school! You made me feel a failure as a parent and my daughter upset and more worried about money than she already was
Friday, 5 January 2018
When the Media make a JOKE out of Fibromyalgia
Having lived with chronic pain throughout my teenage years and all of my adult life I have dedicated my time and energy to raising much needed awareness of all Invisible illnesses and disabilities. Now how do you think I felt when a popular day time TV programme presented by Eamon Holmes and Ruth Langsford does a segment on Fibromyalgia with a woman who dresses up as a doll, twirls around, wears sky scraper heels and a cement mixer full of make up? Yep you got it....annoyed doesn't quite cut it. I'm down right angry, disappointed and disgusted.
Towards the end of last year I had been approached to go on This Morning and talk about living with Chronic Pain and Fibromyalgia following the film Lady Gaga released about living with the condition herself. I spoke at length with the researchers and they took an in depth history from me. Transport was arranged. Then arrangements changed and Dr Ranj was to come to my home and interview me for the show however at the 11th hour the story was dropped and a story on having sex with aliens was run instead but with This Morning informing me they are still interested in running the story to RAISE AWARENESS.
Then today they run this ridiculous story basically making fun of the disabled and chronic pain community. Let me tell you this.....I would LOVE to wear high heels, get dressed up, wear make up and have my hair done but the reality is I struggle to get up, I need help getting dressed, my hubby is my carer as are my children. I've lost my job due to these shitty illnesses and This Morning feel fit to make a mockery out of our struggles, our horrendous crippling pain and fatigue. My go to clothes are my leggings or pj's. I wear flat boring shoes or boots. I'm guessing the plight of the disabled and chronic pain community is not interesting enough for the TV ratings but yet its ok for the media to make fun of us.
I spend my life raising awareness and in one TV show they have disregarded and put back the work of myself and all the other campaigners. The Disabled and Chronic Pain Community are NOT a laughing stock. All we want is understanding, awareness, compassion and to be believed.....its not a lot to ask is it?
Towards the end of last year I had been approached to go on This Morning and talk about living with Chronic Pain and Fibromyalgia following the film Lady Gaga released about living with the condition herself. I spoke at length with the researchers and they took an in depth history from me. Transport was arranged. Then arrangements changed and Dr Ranj was to come to my home and interview me for the show however at the 11th hour the story was dropped and a story on having sex with aliens was run instead but with This Morning informing me they are still interested in running the story to RAISE AWARENESS.
Then today they run this ridiculous story basically making fun of the disabled and chronic pain community. Let me tell you this.....I would LOVE to wear high heels, get dressed up, wear make up and have my hair done but the reality is I struggle to get up, I need help getting dressed, my hubby is my carer as are my children. I've lost my job due to these shitty illnesses and This Morning feel fit to make a mockery out of our struggles, our horrendous crippling pain and fatigue. My go to clothes are my leggings or pj's. I wear flat boring shoes or boots. I'm guessing the plight of the disabled and chronic pain community is not interesting enough for the TV ratings but yet its ok for the media to make fun of us.
I spend my life raising awareness and in one TV show they have disregarded and put back the work of myself and all the other campaigners. The Disabled and Chronic Pain Community are NOT a laughing stock. All we want is understanding, awareness, compassion and to be believed.....its not a lot to ask is it?
Friday, 29 December 2017
Survived Christmas with a Chronic Illness?
Have you survived the festive season? Me neither. RA reared it's ugly head putting a massive dampener on my festive spirit. We have had a number of difficult Christmas's and this one has been up there as far as fighting the relentless Arthur.
Arthur decided it was partying hard in my body on 23rd December and it's still not stopped. Horrendously painful joints, raging temperature which lead to nausea and vomiting and relentless fatigue. Christmas eve was spent sleeping in a haze of pain relief before putting my big girls pants on, sucking it up and pasting the smile on my face for the sake of our 3 beautiful children as we head out to the cinema.
I ease myself into the comfy cinema seats, the lights dim and I fight fatigue to stay awake. Thankfully the film was rather funny. Hubby has to lift my stiff and creaky body out of the chair, I take more medication and head off to a friends house for our annual Xmas eve gathering. We're lucky enough to have wonderful friends who do understand but still I don't want the evening to be about my condition.
Xmas day arrives with excited children. Their laughter, energy, enthusiasm and love gets me through the day. We visit Pauls beloved mother in her care home first thing. No matter how bad things get I am thankful I am still able to live in my own home.
Friends arrive for festive dinner and we graze on copious amounts of food and merriment but by 5pm I'm fading fast. Our friends leave and I'm snuggled in fleecy jammies and a quilted duvet. For one day of fun and enjoyment I'm paying the price of pain, stiffness and fatigue. I thought I had fooled those around me but the concerned look in my hubby's eyes says it all....I haven't.
I've been waiting since August for facet joint injections and hip injections. Basically the dashing Dr Huntley sticks enormous needles into my back and hips guided via x-ray to inject steroids to reduce inflammation and help ease some of my pain. The NHS is a wonderful thing and I'd be a complete wreck without it but .....there's always a but, and I don't want to sound ungrateful, but I'm no longer coping with back, pelvic and hip pain. My right hip is subluxing (proper term for partial dislocation) which bloody well hurts like a massive hurty thing yet the registrar at Stanmore has said I need 6 months anti TNF therapy before he'd consider surgery which is contradictory to the previous registrar I saw. Im waiting for anti TNF injections to be delivered. My rheumy okayed them a couple of weeks or so ago and now its int the hands of a medical company. You can see how confusing and frustrating this can be.....hugely long waiting times for procedures that patch me up to mask the issue so I can keep plodding onwards in an attempt to be a mother and wife and also contradicting information from a registrar at one of the top orthopaedic hospitals in the country. Needless to say various messages have been left at Queens Hospital and Stanmore to find out a state of play before I become completely sofa bound. Then to top it off my smart crutches have broken. These amazing crutches have been a godsend for the last 3-4 years even supporting me on various media pieces and trips to the Houses of Parliament to raise awareness of Arthritis, all invisible conditions and disabilities. Now starts the saving up of the £100 to replace them, it's a lot of money but so worth it.
This picture by lupie linda sums up the situation. I don't have Lupus but the statements fit all autoimmune diseases and chronic illnesses. We all put on the mask to prevent those around us seeing the true pain, frustrations, loneliness of battling these diseases/conditions.
As 2017 comes to a close I wish you all a pain free, healthy and happy 2018 filled with love and friendship.
Arthur decided it was partying hard in my body on 23rd December and it's still not stopped. Horrendously painful joints, raging temperature which lead to nausea and vomiting and relentless fatigue. Christmas eve was spent sleeping in a haze of pain relief before putting my big girls pants on, sucking it up and pasting the smile on my face for the sake of our 3 beautiful children as we head out to the cinema.
I ease myself into the comfy cinema seats, the lights dim and I fight fatigue to stay awake. Thankfully the film was rather funny. Hubby has to lift my stiff and creaky body out of the chair, I take more medication and head off to a friends house for our annual Xmas eve gathering. We're lucky enough to have wonderful friends who do understand but still I don't want the evening to be about my condition.
Xmas day arrives with excited children. Their laughter, energy, enthusiasm and love gets me through the day. We visit Pauls beloved mother in her care home first thing. No matter how bad things get I am thankful I am still able to live in my own home.
Friends arrive for festive dinner and we graze on copious amounts of food and merriment but by 5pm I'm fading fast. Our friends leave and I'm snuggled in fleecy jammies and a quilted duvet. For one day of fun and enjoyment I'm paying the price of pain, stiffness and fatigue. I thought I had fooled those around me but the concerned look in my hubby's eyes says it all....I haven't.
I've been waiting since August for facet joint injections and hip injections. Basically the dashing Dr Huntley sticks enormous needles into my back and hips guided via x-ray to inject steroids to reduce inflammation and help ease some of my pain. The NHS is a wonderful thing and I'd be a complete wreck without it but .....there's always a but, and I don't want to sound ungrateful, but I'm no longer coping with back, pelvic and hip pain. My right hip is subluxing (proper term for partial dislocation) which bloody well hurts like a massive hurty thing yet the registrar at Stanmore has said I need 6 months anti TNF therapy before he'd consider surgery which is contradictory to the previous registrar I saw. Im waiting for anti TNF injections to be delivered. My rheumy okayed them a couple of weeks or so ago and now its int the hands of a medical company. You can see how confusing and frustrating this can be.....hugely long waiting times for procedures that patch me up to mask the issue so I can keep plodding onwards in an attempt to be a mother and wife and also contradicting information from a registrar at one of the top orthopaedic hospitals in the country. Needless to say various messages have been left at Queens Hospital and Stanmore to find out a state of play before I become completely sofa bound. Then to top it off my smart crutches have broken. These amazing crutches have been a godsend for the last 3-4 years even supporting me on various media pieces and trips to the Houses of Parliament to raise awareness of Arthritis, all invisible conditions and disabilities. Now starts the saving up of the £100 to replace them, it's a lot of money but so worth it.
This picture by lupie linda sums up the situation. I don't have Lupus but the statements fit all autoimmune diseases and chronic illnesses. We all put on the mask to prevent those around us seeing the true pain, frustrations, loneliness of battling these diseases/conditions.
As 2017 comes to a close I wish you all a pain free, healthy and happy 2018 filled with love and friendship.
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