I know other people feel the same as it’s a common topic of conversation on support groups and between friends who are hobbling the same or a similar path. Why can’t people just see past our disabilities? Funnily enough the DWP are able to see past any persons disability and into a completely parallel universe where the challenges of living with a disability are not even present (wouldn’t that be nice)
Illness and disability can strike at any age. Ripping apart any hopes or dreams that you may have, but you fight back. Learn coping mechanisms, take the toxic medication that makes your hair thin, put weight on, nausea, fatigue yada yada you get the idea and yet people only see the wheelchair, the hearing aids, walking sticks, crutches, wrist or ankle braces. Your career is pulled from you like a rug on the floor but you focus your efforts on other things. Family life maybe, writing, drawing, crafts, possibly volunteering. However there are very few that can see your potential because all they see is the wheelchair, the crutches, the walking sticks, the braces. The what you might not be able to do rather than the things you can do and the skills and talents you can can bring to the table. You put time, effort, research and experience into tasks and causes that are important you but you don’t quite hit the mark or the grade in the eyes of those who make decisions but are happy to use your ideas and hard work.....kinda sucks, actually it sucks big time. Do you think they are looking past the disability or putting barriers in place? Many people living with long term conditions or disabilities have come up against the same or similar scenarios and situations. I wish I could make it right. Shake the world and say get a grip! Use the skills of those around you and their passions and experiences. Be kind ! However for now it’s a case of putting on my big girl pants and continuing to fight for the rights of disabled people. Fighting to make the world more inclusive and raising awareness of all disabilities whether you can see them or not. Just because a person has a particular disability does not mean they can not be a part of society and make a difference.
I made this video with Arthritis Research UK nearly 4 years ago, I was at an all time low just being evicted from 2 weeks in hospital suffering with the most horrendous flare up. This is my life living with severe RA and hypermobility. I like to think of it as being Differently Abled not Disabled.
https://vimeo.com/149154005
Please see past the persons challenges and see their potential, their spirit, their soul. There is more to a person than their disability.
Thursday 31 May 2018
Wednesday 16 May 2018
Acceptance ?
Do we ever full accept our long term conditions, illnesses, disability? Or do we merely just learn to compartmentalise putting feelings, thoughts etc into boxes where they bubble over from time to time to rear their ugly heads? If you catch me on a good day (whatever that might be) I’d say yes I’ve accepted that my life has changed and I have to go about things in a different way. Sort of like taking the scenic route somewhere rather than the direct motorway. But, and there’s always a but isn’t there? If you get me on a high pain, high fatigue, low mood day then, apart from giving the iconic “I’m Fine” answer, the conversation going round in my head is likely to be “I hate this”, “I hate living like this”, “I want the pain to stop just for 5 mins” , “why me?” , “I want the old me back”
I often get told how inspirational I am, but, I don’t see that. To be honest you never know what being strong is until being strong is your only option, especially in public. I’m as guilty as the rest of the wonky RA and chronic pain community for putting on a mask, smiling and trying to look normal when inside I’m shattered. This week is Mental Health Awareness Week. Over the years I’ve noticed that there is little to no mental and emotional support offered or available when you are diagnosed with a long term health condition. Many people, like myself, have co-morbidities and that can plunge us into a never ending cycle of pain and depression. Although I have never been disagnosed with depression I do know that my mood can be low. I have dark times when I can’t see the light at the end of the long dark tunnel. Mental health AND long term ill health go hand in hand and there should be some support and guidance out there.
Over the last few weeks I have learnt what awesomely amazing friends I have. Some of those friends have long term conditions themselves. There’s a few that I literally couldn’t live without (they know who they are). They drop a message or text to say hi, post funny posts on social media, pop by just because they are in the area, pick me up to go for all you can eat breakfast while we talk about anything from men, children, being wonky and sex. Some of those even kept me going on the annual trip to Hastings for a weekend with Giants and Greenmen. I’ve learnt that my hubby still loves me after nearly 12 years, still finds me attractive despite my wonky body and is still proud to walk down the street with me whether he’s holding my hand with me in my power chair, pushing me in my wheelchair or resting his hand on my hand while I hobble on my crutches. What I suppose I’m trying to say is that even when times feel dark and all I can do is curl up and cry, I’m lucky enough to have some really important people in my life who for whatever reason actually think something (not nasty in a I want to get a hitman out on you way) but in a good way. I need to tell those people more often that I value their friendships and love them. I’m thankful to have them in my life.
I often get told how inspirational I am, but, I don’t see that. To be honest you never know what being strong is until being strong is your only option, especially in public. I’m as guilty as the rest of the wonky RA and chronic pain community for putting on a mask, smiling and trying to look normal when inside I’m shattered. This week is Mental Health Awareness Week. Over the years I’ve noticed that there is little to no mental and emotional support offered or available when you are diagnosed with a long term health condition. Many people, like myself, have co-morbidities and that can plunge us into a never ending cycle of pain and depression. Although I have never been disagnosed with depression I do know that my mood can be low. I have dark times when I can’t see the light at the end of the long dark tunnel. Mental health AND long term ill health go hand in hand and there should be some support and guidance out there.
Over the last few weeks I have learnt what awesomely amazing friends I have. Some of those friends have long term conditions themselves. There’s a few that I literally couldn’t live without (they know who they are). They drop a message or text to say hi, post funny posts on social media, pop by just because they are in the area, pick me up to go for all you can eat breakfast while we talk about anything from men, children, being wonky and sex. Some of those even kept me going on the annual trip to Hastings for a weekend with Giants and Greenmen. I’ve learnt that my hubby still loves me after nearly 12 years, still finds me attractive despite my wonky body and is still proud to walk down the street with me whether he’s holding my hand with me in my power chair, pushing me in my wheelchair or resting his hand on my hand while I hobble on my crutches. What I suppose I’m trying to say is that even when times feel dark and all I can do is curl up and cry, I’m lucky enough to have some really important people in my life who for whatever reason actually think something (not nasty in a I want to get a hitman out on you way) but in a good way. I need to tell those people more often that I value their friendships and love them. I’m thankful to have them in my life.
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