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.
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