Spoonie community forum meeting chronic disease lupus multiple sclerosis fibromyalgia

Spoonie United Chronic Illness Forum Autoimmune Disease Help CommunityWelcome to Spoonie United, the Chronic Illness Forum! A sounding board for all who have a chronic illness who wish to air their grievances or offer support to a fellow Spoonie they wish to assist.

Introduction

Hi, I am Stephen Walker, the purveyor of this Blog. I have Multiple Sclerosis, my step-sister and my best friend have Fibromyalgia, and I thought it might be an idea to have a place where we could all come together and welcome the world to share life with a chronic illness.

The term “Spoonie” is new to me. I only came across it when I joined a board on Pinterest going by the Spoonie name. It transpires that anyone with a chronic illness is known as a spoonie. Why? I asked myself that very question, so I Googled it and came with the name Christine Miserandino who has lupus. She came up with the idea of counting spoons to explain her limited supply of energy living with the fatigue of lupus.

So a Spoonie is not some derogatory term for those of us living with chronic illness. It is a fond term we have adopted as special for ourselves. A badge we can wear with pride.

Spoonie United is born

I have stated, on many occasions, that I wish to use this Blog’s popularity to aid my Spoonie community. Yes, I have only recently adopted the Spoonie name, but I like it and hope you do too.

So, I have put together this post as an invitation to all fellow chronic illness experts; yes, that’s you! To share your thoughts and experiences with your particular illness to make others aware of what you live with every day. I hope that the community will come together as our collective knowledge is surely second-to-none.

This is not a Forum but, if we use it wisely, as a Chronic Illness forum, it will serve the purpose

WordPress has a perfectly serviceable comment system and if you have a point of view or a questions then leave it in the comment section and I or one of my Blog readers will respond.

If the community is willing, it will work. If nobody wishes to participate, it won’t.

So calling all fellow chronic illness people. All of you proud Spoonies – let’s make this work!

Let us know what illness you have. What you do to minimise the impact it has on your life and what prognosis your doctor or medical experts have given you.

There are countless numbers of people living with a chronic illness and many of them will feel alone and abandoned. Perhaps, by leaving your thoughts here you will provide some solace for those who feel isolated.

Many of us will be new members of this select community and, with a new diagnosis, will be confused, afraid and looking for answers. Perhaps by pooling our resources, we can provide some of those answers and provide a little peace of mind to our new members.

I have deliberately kept this post short as it is not the place for my ramblings. I wish it to be a place for you to share your views.

Exceptional Comments

Most of my posts on this Blog are automatically closed for comment after a preset number of days. I have made this post an exception and it will stay open for comments as long as we need it.

If you find you wish to do this with your blog then install the plugin “Override Comment Deadline” which I found reference to on WPBeginners very useful WordPress resource.

So, do not pass up the opportunity of being one of the first to make your mark for posterity.

Share the love

Of course, now comes the unashamedly self-promoting bit. For this to be a successful community page, it has to be seen by, and participated in by, the chronic illness community. And, for that to happen, the chronic illness community must know about it. So, once again our fate lies with you. Share this page. You have a wonderful social media following. Use it.

There is a set of sharing buttons at the foot of this post to allow you to share the love easily and effectively.

Over to You

If you have Multiple Sclerosis, Fibromyalgia, Lupus, Chronic Fatigue Syndrome, Addison’s disease or Celiac, or indeed, any of the many autoimmune diseases that exist we want to hear from you.

Embrace the Spoonie name. Join the conversation. Reach out to your fellow autoimmune fighter.

Head on down to the “Leave a Reply” section below and leave your comment, thoughts, criticism OR whatever is on your mind today. We want this to be YOUR space for your thoughts. Please don’t let your community down!

Only Chronic Illness questions and comments are permitted. We reserve the right to remove any off-topic comments or unduly abusive statements.

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Irene Laker
Guest
Hi, I’m Irene, married to Andy who was diagnosed with MS (Primary Progressive) 14 years ago. Andy is ‘lucky’ in that his MS mainly affects him physically….mobility being main issue but also swallow and speech deterioration. He has no brain ‘fog’ like you do, Steve, in fact his memory is better than mine ! He also has great bladder function, luckily never been affected that way. As there is no treatment for Primary Progressive, it’s really just been a case of managing symptoms and getting on with it. However, a certain someone (your adorable wife), told me about cannabis oil… Read more »
Stephen
Guest

Hi Irene,

Oh, I will be watching this space to see what the cannabis oil does.

I tried to persuade my GP to give me Sativex but she wouldn’t. She referred me to the neurologist who said he didn’t think it would help.

Has 14 years flown by already? – Stop the world, I want to get off.

Nicola Simpson Greenan
Guest
Nicola Simpson Greenan
Hi there, my name is Nicola and I am Stephen’s step sister. When I was 16 I was diagnosed with IBS, and also was suffering from bulimia and depression, at 17 I snapped my anti-cruciate ligaments skiing and then broke and snapped the tendons in my thumb and it has since been broken 4 times. . By the time I was 25 I had osteoarthritis in my right knee and my right hand it was beginning in my back and also my left knee. I had led a very active childhood, swimming, skiing, horse-riding, gymnastics, squash, tennis, cycling and badminton.… Read more »
Stephen
Guest

Nici,

Love you for leaving such a verbose comment. Blimey! You HAVE been going through the mill.
I knew about your chronic pain and your knee surgeries. I wasn’t aware how badly your cognitive function has been impaired.

I can sympathise, only too much. My brain is slowly but surely turning to porridge. If that was not bad enough, after a recent visit to the optometrist, I am told my the optic nerve in my right eye is dying from damage done by MS.

Look on the bright side, we can still share a glass of rioja from time to time.

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