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.

Thank you for visiting this post, have you seen my new product page?

4 thoughts on “Spoonie United – Chronic Illness Forum

  • August 19, 2016 at 7:55 pm
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    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 when you were both here the other day.
    It has arrived, he’s on day two, so watch this space …………..!!!!

    Reply
    • August 20, 2016 at 8:05 am
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      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.

      Reply
  • August 13, 2016 at 1:04 pm
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    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. I managed to continue with most of the sports I enjoyed, especially skiing. I learned to adapt the way I did sport to suit the fact that my right knee was very unstable and my left knee was beginning to feel the strain from compensating.
    By the time I was 36 I had decided that I could no longer live in the very unhappy marriage which I had been in for the past 10 years. It was a huge decision as at the time I had my 3 boys who were all under 9, as well as running my own driving school. I then started to rebuild my life and gradually got myself on an even keel and was relatively happy. During the 18 months since I asked my ex-husband to leave I managed to get by but I was suffering from depression, drinking too much, smoking too much and not sleeping. I met Ken who I have since married 18 months after my marriage broke down and my life changed almost overnight.
    Without realising though the effects of the stress and depression had started to have a detrimental effect on my health. I was struggling to sleep properly and sadly I had to give up my driving school because of the osteoarthritis in my knees, hands and now back. I took some time off and after 6 months I started to look for another job. I had worked in an office environment before I had my children and it seemed the easiest thing to go back to that would suit my knees and back.
    Once I found a job I began to notice that I was really struggling to learn basic things, my memory was really bad, I was finding simple instructions really confusing and complicated, I was making simple mistakes on letters and documents and couldn’t see them until they were pointed out. My boss was not particularly sympathetic and as I didn’t know what was wrong it was impossible to justify what was going on. I left the job after 8 months and started to look for something closer to home. I found an office job 5 mornings a week locally which was perfect. But again, I was really struggling with instructions, noticing mistakes, remembering which systems to use on the computer and the files and folders that needed to be used. My boss did not at all understand and I was feeling really low and confused as to why I was finding everything so hard. I was sacked after 7 weeks which knocked me for 6. Over the following weeks I started to notice that my joints were agony, I wasn’t sleeping, my cognitive function was even worse and I became really depressed. I went to the GP and after blood tests came back inconclusive she referred me to a rheumatologist, where I was diagnosed with Fibromyalgia.
    This was a huge blow as it is a little understood lifelong condition with no real treatment options available apart from painkillers. My life has changed completely and I never know how I’m going to feel until I wake up in the morning. I also now have osteoarthritis in my hands, back, hips, knees and feet, I have eosinophilic oesophagitis, peripheral neuropathy, erythromelagia as well as my IBS, depression and anxiety. I have started to have panic attacks and do find that I become very isolated from people. Several of my conditions are auto immune conditions and are classed are rare.
    When I look at my life and how it has changed over the past 10 years and I think about the fit and relatively healthy person I was back then, it makes me so sad. I can’t plan for things as fibromyalgia is so unpredictable, I was trying to work as a teaching assistant in a school but again the unpredictability of my fibro and trying to control the other conditions meant that I became unreliable and left the job I had. I work occasionally but find it so exhausting. I hate letting people down which makes it really difficult if you physically cannot get out of bed some days. I came across the spoons theory while researching and trying to find a way to cope with life and although it seems ridiculous to compare what you can and can’t do in a day to how many spoons you have in your hand it is the easiest way to explain to someone how life feels living with chronic pain and unpredictable conditions. My life has changed forever and now I just have to learn to live within the confines of my energy levels and pain threshold.

    Reply
    • August 13, 2016 at 1:26 pm
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      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.

      Reply

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