Still Getting There

Hi Everyone, well it's been awhile since I last posted, but what a time I have been having. I completed the Expert Patients Programme course that my rhumo had said may be of help to me. The course was very helpful,many of us had Fibro but where some of us shared symptoms others had totally different ones. We worked together with tutors who like us, either had our condition or lived with chronic pain, at last people who understood. As we worked through the different parts of the course over six weeks we all had good and bad days, we were taught how to take things a little at a time,manage our condition and hopefully accept it. We all saw that as each one of us had a bad day the others helped them pick themselves up rework things so that they could manage.

The course and the people on it gave me the confidace to believe in myself again. So I jumped in with both painful feet and started up my own business. I'm sick of working for min wage long hours and crap jobs, just because I have a disability, I,ve got abrain so I will use it. I also have gone on to become a tutor on the Expert Patients Programme, this has also helped my confidance. Many people don't know about this programme because their doctors can't be bothered to refer them. Please ask your specialist and doctors these programmes are there, they can help. Even if they don't help with the syptoms, they can help with the feelings of isolation. We have all exchanged e- mail addresses and keep in touch, all this can help. Please don't feel alone, don't allow yourselves to get stuck in that never ending circle of pain, depression,fatigue,sleeplessness, uselessness. We are all worth something, we can all do things, even if they are little. One step at a time.

Okay today is great, I don't always feel like this, but I am learning to accept that I CAN DO THINGS, JUST MY WAY.

Hope you all feel a little better and soft gentle hugs.

12 Replies

  • Hi Penny96

    Thank you so much for your post, it is very inspirational and encouraging. I want to wish you all the best of luck with your business and I sincerely hope that it is a great success for you.

    All my hopes and dreams for you


  • Wow Penny, that sounds like an incredible program and imagine all those moderators knowing what they are talking about because they are right there with you.

    Congratulations on all the steps you've taken to improve your life and not isolate. You are an inspiration. If I ever get enough energy to get moving, SLOWLY like you said, it will be a great day (not to say I don't have good days, even super ones). I'm so glad you are getting there and having those wonderful days in the process!

    I do have days that come close, when I work my butt off changing pictures out in the house, transplanting some potted plants, doing laundry, and so forth, but I pay for it the next day. The key like you said is learning to pace yourself. And I know that. We say it all the time on the forum, and I have even suggested it to others. Some example, huh?!

    Again Congratulations! (((( :-}) )))

  • Hi penny96

    I did the EPP course a couple of years ago and found it really helpful and like you said so good to meet people in the same boat. It's a great course. Good luck with your tutoring and thanks for the post. X x

  • Hi Penny96, It was so good to read your post. Very informative and encouraging, even inspiring. It's good to know that there's a little hope out there and the EPP sounds wonderful, I'll have to look into that. Good luck with your new venture and how wonderful that you got so much out of the EPP that you are now a tutor, good for you. 'Pacing' is a word I have come to both love and loathe!! I know it makes sense and have to practice it in everything I do everyday but sometimes (most of the time!) it's very difficult especially when you're having a 'good day' and feel capable of doing things. I don't know about you or others but when I do feel like that I tend to just want to keep going and get done as much as I can. Even though I know I will suffer in the long run. Catch 22 :-/ Keep up the good work and stay strong.

    Best wishes


  • Bravo! :D

  • Dear Penny

    Thank you for your posting and information. I will definitely follow up with my gp. I am in the lucky position to be under the care of a pain specialist (private) and am taking a range of medication which manages the pain. The most important of the medication is the slow release tramadol which I take 12 hourly. Before this I was using just the normal Tramadol and it did not help at all. I am also doing gentle pilates exercises (as much as my energy allows) and visit a toyohari accupuncturist in Glasgow every 2nd week.

    You are truely an inspiration and example to us all.


  • Very encouraging and inspiring x

  • Hi penny, just want to say thanks for such a positive post, its lovely to hear an inspiring story, good luck with the tutoring.

  • Thanks for sharing your story at a time when I'm feeling down xx

    There is always hope, even tho we sometimes don't feel it :-) it can be very hard to see the light at the end of the tunnel when we are crippled with pain amongst other things

    So thanks again for reminding me there is always hope xx

    Best wishes for the future and may all your dreams come true

    Regards Mary ♥

  • Hi Penny96

    Well done for standing on your painful feet, and starting your own business. I went to a Pain Management Clinic and I was the only one there with fibro, so i didn't really come away with much insight on how to manage my fibro pain but did on everyone elses pain as their pain was known about, but not on much for fibro. Good Luck with your own business. Gentle Hugs to you too and a smile :-))

  • Hi Mindful579

    Thankyou for your reply, like you I had also been to a PMC,and like you because the pain is everywhere and not always the same. I found it hard to communicate this to the group. Thankfully the EPP understand this and set up this special group for mainly Fibro suffer'er. They don't just deal with the pain, that can't be cured, just lived with. It's how we live with it that helps make the difference,I found that once I came to understand that I could work with and around the pain. I still have the pain, I've hopefully just learnt that it is part of me and I try my best. I do have bad days, I just don't let them bring me down quiet so often. Try to keep smiling and moving a little at a time. Soft Hugs

  • Like you I attended a similar course which is called spine fit it was very useful and was nice meeting people whom were going throu pain just like me x

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