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.

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

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?