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
Thursday, 11 January 2018
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.
Monday, 20 November 2017
The Elephant in the Room
Being disabled and a wheelchair user I often find that people see my disability rather than the person I am and what I can contribute to society. Over the years I've had people talk about me to my husband or my friends while I'm actually sat there. Assuming that my disability is compromising more than just my ability to move without pain and falling over. How rude is that? I have been known to comment that my mind is sharp and my tongue sharper. Often the comment goes over their heads. I've also had people question my ability as a leader in the Scout movement because of my disability. I was annoyed by this as the person concerned should have known better, and you know what? I proved them wrong. I'm a great leader, I write a fantastic programme with the leaders of our beaver colony. Parents often compliment us on what we do for the young people. I've had issues with accessibility which resulted in me not being able to take part. I was hurt and angry as it still seems the elephant in the room is my disability and my wheels instead of legs. It raised questions about inclusion and accessibility which are 2 subjects I am extremely passionate about.
Since the negative situations arose positive steps have been made and my opinion was asked. ....only at group level but that's the front line level where I can help make scouting more accessible for leaders and more importantly young people who are differently abled, after all scouting is for all regardless of ability or financial constraints.
Fast forward to this weekend. I'm a County Beaver Leader , a role which I'm proud of. It enables me to support districts and leaders across the whole of a county. I attended a programme forum and how people in middle management roles and higher can support the leaders on the front line delivering these amazing opportunities for young people. For once my disability wasn't an issue. People spoke to me.....yes! You have no idea how good that made me feel. On workshops which involved moving around to speak to other people and form groups, people came to me. I was included, not ignored and my opinion was valued. I came away having met new people with the same interests and passions and with ideas that I can take back to the teams I am part of.
Great things can happen when people see past the obvious, get to know the person. You never know that person may be able to bring skills, and opinion, a different and valued view point to the table.
I'd love to be able to use my experiences and knowledge to make inclusion and accessibility second nature so that more young people and adults with challenges from physical disabilities to learning challenges can enjoy scouting and gain new skills and experiences.
Remember. ....not disabled just differently abled.
(Disclaimer : these are my own views and not those of the organisations I am part of)
Since the negative situations arose positive steps have been made and my opinion was asked. ....only at group level but that's the front line level where I can help make scouting more accessible for leaders and more importantly young people who are differently abled, after all scouting is for all regardless of ability or financial constraints.
Fast forward to this weekend. I'm a County Beaver Leader , a role which I'm proud of. It enables me to support districts and leaders across the whole of a county. I attended a programme forum and how people in middle management roles and higher can support the leaders on the front line delivering these amazing opportunities for young people. For once my disability wasn't an issue. People spoke to me.....yes! You have no idea how good that made me feel. On workshops which involved moving around to speak to other people and form groups, people came to me. I was included, not ignored and my opinion was valued. I came away having met new people with the same interests and passions and with ideas that I can take back to the teams I am part of.
Great things can happen when people see past the obvious, get to know the person. You never know that person may be able to bring skills, and opinion, a different and valued view point to the table.
I'd love to be able to use my experiences and knowledge to make inclusion and accessibility second nature so that more young people and adults with challenges from physical disabilities to learning challenges can enjoy scouting and gain new skills and experiences.
Remember. ....not disabled just differently abled.
(Disclaimer : these are my own views and not those of the organisations I am part of)
Wednesday, 1 November 2017
Breakfast at Parliament
Today started at 6am for me when the alarm went off for me to get ready to attend a meeting at the houses of parliament about multi-morbidities and mental health. Putting it simply it was about how long term health conditions affect mental health and how research and support can be improved.
For me mornings are difficult, just getting out of bed is a struggle with stiff and painful joints but I felt it was important for me to attend today and share my story and experience. Living with long term health conditions definitely affects our mental health but there is little support available or sufferers are not told of any help available.
The event was well attended despite it being early and with other events happening at the same time . I met some amazing and inspirational people including a couple who spoke about their experiences of how Parkinsons Disease and the medication had affected their mental health and the mental health of everyone in their family. You see its a vicious circle. Living with a long term and painful condition like Rheumatoid Arthritis, Fibromyalgia, Ehlers-Danlos Syndrome (the list is endless) affects how we feel mentally. Many sufferers battle depression and severe mood swings. Medication can cause depression too. We're frustrated and angry and upset and this also has an inpact on those closest to us, our loved ones, partners and children.
When you're diagnosed with a long term condition you see a specialist or a group of specialist's but at no point are you asked how you feel, or are coping, or how the diagnosis affects those around you. My gorgeous now 9 year old son lives with chronic pain. He has had some really difficult times where he's trying to understand what's happening to him, the frustrations and anger. His mood is up and down. One minute he's my happy smiley boy and the next he's teary or frustrated and snappy. I've explained to our gp, his paediatrician and physiotherapist but no one has offered help or pointed us in the right direction to get help. The school referred him to a home school support worker and he had 5 or 6 sessions with her but that was it. There was no coping mechanisms or support for parents to support our child.
My experience is similar to my son's. I get frustrated and feel 'down' about my situation, my condition and the fact it's a life long condition. I'm not going to get better, I've got to learn to manage it and I will continually learn to cope. I know my condition and my moods affect those closest to me. When I'm in so much pain I can't get out of bed, when I'm wrapped up in a blanket and crying, when I snap at my loved ones for not understanding, when medications cause mood swings from highs where the Meds are helping to the deep lows when you're weaned of steroids or certain pain relief because it's not good to be on them long term. I feel it's important that when a person is diagnosed with a long term condition that support is available for those people in respect of their mental health and coping mechanisms.
I do try to practice mindfulness and meditation. With all my children we tell day stories about our day before bed time but we make a point of saying the positives and there has to be at least 3 positive things. It doesn't matter how small these things are as long as they are positive. Some days my positive is that I got dressed in the morning or I managed to brush my hair. They're still positives and still achievements. Today my achievements are massive
1) I went to the houses of parliament
2) I spoke about my experiences to hopefully make a difference for other people
3) I snuggled on the sofa with my 3 amazing children and hubby.
I'd like to thank Arthritis Research UK for the opportunity to attend this mornings breakfast meeting. Being involved and trying to make a difference raising awareness helps me. I feel useful where arthritis and pain has taken so much away from me.
Let me know your 3 positives
For me mornings are difficult, just getting out of bed is a struggle with stiff and painful joints but I felt it was important for me to attend today and share my story and experience. Living with long term health conditions definitely affects our mental health but there is little support available or sufferers are not told of any help available.
When you're diagnosed with a long term condition you see a specialist or a group of specialist's but at no point are you asked how you feel, or are coping, or how the diagnosis affects those around you. My gorgeous now 9 year old son lives with chronic pain. He has had some really difficult times where he's trying to understand what's happening to him, the frustrations and anger. His mood is up and down. One minute he's my happy smiley boy and the next he's teary or frustrated and snappy. I've explained to our gp, his paediatrician and physiotherapist but no one has offered help or pointed us in the right direction to get help. The school referred him to a home school support worker and he had 5 or 6 sessions with her but that was it. There was no coping mechanisms or support for parents to support our child.
My experience is similar to my son's. I get frustrated and feel 'down' about my situation, my condition and the fact it's a life long condition. I'm not going to get better, I've got to learn to manage it and I will continually learn to cope. I know my condition and my moods affect those closest to me. When I'm in so much pain I can't get out of bed, when I'm wrapped up in a blanket and crying, when I snap at my loved ones for not understanding, when medications cause mood swings from highs where the Meds are helping to the deep lows when you're weaned of steroids or certain pain relief because it's not good to be on them long term. I feel it's important that when a person is diagnosed with a long term condition that support is available for those people in respect of their mental health and coping mechanisms.
I do try to practice mindfulness and meditation. With all my children we tell day stories about our day before bed time but we make a point of saying the positives and there has to be at least 3 positive things. It doesn't matter how small these things are as long as they are positive. Some days my positive is that I got dressed in the morning or I managed to brush my hair. They're still positives and still achievements. Today my achievements are massive
1) I went to the houses of parliament
2) I spoke about my experiences to hopefully make a difference for other people
3) I snuggled on the sofa with my 3 amazing children and hubby.
I'd like to thank Arthritis Research UK for the opportunity to attend this mornings breakfast meeting. Being involved and trying to make a difference raising awareness helps me. I feel useful where arthritis and pain has taken so much away from me.
Let me know your 3 positives
Friday, 13 October 2017
When Wonkies Meet
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.
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.
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.
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