International M.E Awareness Day - Still resting with my Battle Dog by my side

May is invisible illness awareness month, May 12th is International ME and FMS awareness day.

ME - Myalgic Encephalopathy

FMS - fibromyalgia

If you would like some info about ME meassociation.org.uk/about/...

The reason its May 12 is because it was Florence Nightingales birthday and she too suffered - she was left housebound and bed bound for decades.

I have ME and other chronic conditions that make me disabled, most disabilities are in fact invisible. The 'Spoonie' in my name is a reference to living with chronic illness, the idea that we only have so many spoons each day and each activity costs us a spoon until there are none left. You can read more about the spoon theory here butyoudontlooksick.com/wpre...

I am happy to talk about my illnesses.

I got sick when I was a teenager and never got better. I struggled through my A levels and then I crashed. I was mostly housebound and in fact largely bed bound. The most severe symptoms at the time were hypersomnia, cognitive dysfunction (brain fog) and pain all over body that I can only describe as my body being on fire, I couldn't bare anyone's touch let alone have them in my physical space.

I was lucky I had a good doctor and got the message rest, rest and more rest. Though I was a teenager I would still (and sometimes still do) get it wrong. I regained enough health to go to Uni, I found a fantastic Uni that really supported me and in fact I missed almost the entirety of my final term but I graduated.

I ended up in full time employment and was able to cope. It was hard and sacrifices had to be made, but then it just became life and you don't really miss what you've never experienced.

A few years ago I had a bad relapse combined with back spasms. I was barely able to walk, some days it would take over an hour to get out of bed and I would need my husbands help to take a few agonising steps. I would shuffle slowly around the supermarket with a death grip on the trolley and burst into tears as soon as I made it back to the car. Every thing took its toll including my employers I felt pressured into trying things that I knew at best wouldn't work and at worse (and in my case) make it all worse, making my recovery even harder. I felt out of control. At the beginning of this year I lost my job through ill health.

But I had my control back.

Ferdinand was my reason to walk again, in fact walking the dog was my main goal written in my back care plan. I have always loved walking and its something I have always pushed myself to do. I felt he was getting neglected, he wasn't getting the exercise he really needed. Not once did he complain or act up, no he is constantly by my side. There were days when I thought it was selfish keeping him and I should find him the home he really deserved. My husband didn't really like to leave me alone in the house for long in case I fell or set alight to the kitchen again (ok so just a pan, but if my husband hadnt have been there who knows what would have happened), so Ferd would just get the odd quick walk at best. The compensation though is we do have a big garden so he was able to still run about and have mad moments, but its not the same.

I could walk - so could I run?

I couldn't afford to go to the gym. I have multiple joint issues. Years ago I was told that I shouldn't exercise out of water.

Medical advice changes.

So can I run?

Yes I can, I will be starting week 8 at some point this week (hopefully tomorrow).

Aside from posting here I have also been blogging my couch to 5k journey littlemouselilly.blogspot.c...

Please note:

I don't want people to read this and get the wrong idea and think ME is made better through exercise. It isn't. I know my body, I know when and where I can push or try to push my limits. I know that I have had periods when this would have been lunacy and would have made me worse and jeopardised my future.

Please don't use my experience to try and push someone who it isn't right for or they are not ready as it could further damage their health.

For people with chronic illness/disability exercise and making a positive change doesn't have to mean getting all sweaty there are many simple stretches that you can do in a chair and some that can even be adapted to do in bed (search chair exercises for limited mobility), but again I urge caution it is not right for everyone. If you or someone you care for do decide that you/they want to try and increase fitness my advice is always to consult with your doctor first

6 Replies

oldestnewest
  • Oh Spoonie, thank you for sharing all this with us. I'm so glad that you have found you are able to run and that your faithful Ferd goes out with you. I bet both he and hubby think you are wonderful. Very near to graduation now! All the best.

  • Spoonierunning I had no idea that you have battled with this. I can empathise with so much of what you have written. I lost my job due to ill health just over a year ago. I had nerve root damage in my neck/shoulder which was probably caused by my employment and they sacked me for not returning to work earlier, even though my physio and spinal specialist told me not to. I had difficulty moving, turning my head, and was in a lot of pain, which led me to feel out of control, and I developed depression. I gained weight through inactivity and found that red wine alleviated the pain better than the awful painkillers I was on. Since then, I have developed areas of pain all over my body which feels like a hot knitting needle being poked in me; I too have great difficulty concentrating and feel extremely tired. Some days I just want to lie in bed all day. I have an appointment to see a rheumatologist, as it is suspected that I have developed fibromyalgia. One thing I do know, is that although some days I feel like I've had enough; this running lark has boosted my self-esteem and improved my mental well-being to such an extent, that I really don't want to give it up. Thank you for posting that and sending you big hugs and best wishes for the future :)

  • Spoonie you are an inspiration , the way you are so positive and just get out there with the lovely Ferd and make the best of a very hard situation. I really admire your attitude, and always enjoy reading your adventures from week to week. all the best for graduation, not long now :)

  • Hey Spoonierunning, your posts always make me feel blessed to have my health, ashamed that I post whinges about my dodgy knees but mostly, they make me feel inspired by the sheer effort you're putting in to living your life the way you want to; making choices about what you want rather than being defined by your illness. Keep up the good work Sweetie, you're being amazing every single day. You will graduate and we'll all be there, cheering you on every step of the way. Go Spoonie!! Go Spoonie!! xx

  • Sorry that you have had to postpone the start of week 8 - I know how much you've put into progressing steadily. Hopefully, you will be out there again shortly and on countdown to graduation. There isn't anything I can add to what has already been said here so I will just say Good Luck and Best wishes.

  • Thank you for sharing that with us, Spoonie. Everything you've been through with your health sounds dreadful, but you maintain your humour and make us laugh and smile with your posts - it's really an inspiration and after reading everything you've been through, I will think twice before whinging on about trivialities. I really hope you're able to start week eight tomorrow and all the very best to you and Ferd for it! :-)

You may also like...