Positive Update

[Turquoisesummer]

Hi friends,I hope everyone is doing ok and has had a nice, day 😊 I wanted to share something positive because I've been struggling so much for the past 2 years which have felt like a non-stop flare, and I had to stop working again 2 years ago and go on the disability pension here in Australia. I've had to stop working several times since I got fibro 6 years ago and each time has been about double the length of the previous time. This 2 year "flare" has been the worst and to be honest most days I hoped I just wouldn't wake up the next day and couldn't see how I'd get through potentially another 50+ years like this..

This time last year I was in unbearable pain and it would take me half an hour to shuffle the 4 houses down my cul-de-sac and back. I'd have to stop at the corner and stretch for at least 20 minutes before I could make it back to my house. I couldn't shop, cook, shower some days, walk my dog😕 Showers when I could shower took me 3 hours..

Now, a year later, I am able to again walk my dog for 20-30 minutes a day most days, sometimes longer. I do my own shopping, most of my own cooking (this can still be hard and sometimes I just order delivery), I can shower every day, and in 30 minutes, sometimes less. I've been able to start doing cardio almost every day at my gym, up to 30 minutes with breaks, and can do 1 hour hot yoga classes again. I even did a half hour abs class yesterday with some breaks (it hurt to sneeze today🤭) and the pain I get from exercising I no longer see as a bad thing but something that keeps me going because I know that I'm benefitting my body, as much as I am able. The pain is now motivating for me, and the more exercise I've been able to do, the less the pain seems, or the better I can handle it.. could be the feel good chemicals from the exercise lol. The thing that hurts the most now is my jaw and eyes which I can't figure out how to fix lol

I know that some or many people with fibro aren't able to workout or not a lot, and that it seems to make no sense how we can be working full time one moment and stuck in bed for months soon after (I think stress has a big part to do with it, at least when I look back at my own experiences). And if someone told me I'd be where I am today, even though I've been better with fibro than I am today, I wouldn't have believed them when I could hardly walk last year. I thought that was it for me and there was no hope, that fibro had gotten the best of me.

But slowly I've been able to "fight the pain back" as another member mentioned they did🙂 it's been the worst 2 years of my life, with many setbacks where I'd feel a bit better for a day, overdo it, and then be worse for 2 or so weeks. But my desire and need to regain my independence and to walk my dog to keep her healthy and happy (she's going to turn 14 this year!🥰 and she's always here for me and has gotten me through so much❤) kept me pushing through (and I don't recommend to push through the pain until the point you're set-back for weeks like I did haha. I do think that learning to pace myself, the hardest thing lol! is something that has also helped me recover to the point I am now).

Sorry, I can never seem to keep it short.. I just write what my brain is saying and don't know how to edit anymore...🤭

Incase it can help anyone, the things that I think have helped me are pacing (ugh I hate pacing😂), stretching, relaxation/deep breathing, dealing with trauma (therapy if helpful), reducing stress/learning how to deal with stress, learning to accept the changes and losses fibro has caused (maybe the hardest thing at least for me), doing as much as you can without overdoing it (related to pacing.. rest when you feel the need or even before you feel the need and then, if you can, keep going, and if you need to just rest, rest. Calming music, audio books and podcasts can help with this when you can't move but feel restless or bored, although at my worse times I've had trouble concentrating and comprehending spoken words.. Music is always good😊), yoga nidra is amazing (just google it if you haven't heard of it or tried it😊), also finding and connecting with supportive and understanding people like you guys has helped me soo much💕 another thing is the sauna.. amazing, I go every day if possible and if I don't if feel the difference! I could never stand the cold, cold was literally pain to me.. but I've slowly trained myself to have cold showers after the sauna and at the end of my daily shower and now the cold feels as good as the heat on my aching muscles. I've also been walking barefoot a lot and stretching and moving while barefoot in my backyard after I wake up which really helps. I find that the soles of shoes cause my whole body to tense up more because it's kind of like you're balancing on something and your feet can't properly move or relax and I don't know but I feel the tension in my whole body. I walk my dog barefoot as much as possible🙂

I'm gonna end it here because this is probably way too long already and at my worse times it's so hard to read or comprehend. Sorry again for such a long post and I know you all might already know and use these strategies, but incase anyone doesn't and it might help I wanted to share.

God bless and I hope you all sleep well and have a relatively pain-free day and night 💛 and thank you all for your support. This community is amazing and I've been so blessed by you all!! 😊

Xx

Edit: Guys! Just saw this super interesting video. I wonder if it does relate to fibro pain?! (it's about facsia)

youtu.be/01LbcCDTwF4(Not working as expected?)

Blessings ❤

[Dizzytwo Moderator]

Great post, I agree movment is my own way of dealing with pain even though I am stuck with a wheel chair.

I have had fibro for 40yrs. Wheel chair for well over 20yrs. But I would definitely say use it or lose it. If it only means getting out of the bed and sitting in a chair to start with.

Thanks for a very positive post loved it 🤗🤗

[Turquoisesummer in reply to Dizzytwo]

Thank you Dizzytwo! I could have used a wheelchair for a while there and I'm sorry for your struggles🙁 I get you, and wow.. 40 years? you're so strong and inspirational. Thank you for being here for us..💞 I know all our situations are so different, and I struggled so much the past year when I felt I needed a wheelchair (except that I couldn't move it myself with my arm pain and had noone willing to help me🙈).I hope that you are coping well and thank you again for your encouragement! You are clearly such a beautiful soul!🥰 Wishing you the best!

[Dizzytwo Moderator in reply to Turquoisesummer]

Thank you so much for your well timed kind words. Been quite poorly for the last few day so you lovely reply has cheered me up no end. I have an online friend she is from Queensland. We have been online friends for a few years now Take care and enjoy the rest of your weekend xx

[Turquoisesummer in reply to Dizzytwo]

Aw no problem 💗 I'm so glad I could help someone🙂 this condition can be torture at times🙃 sorry for my late reply! I hope you had a lovely weekend😊 and thank you for your reply☺xx

[Steakandkidney20]

I loved this post too. It’s so reassuring to know there are others coping with our struggles. To know that there are strategies no matter how bad we feel. It’s so difficult sometimes, often I feel like I’m drowning no matter how hard I try. And quite honestly just plain “frightened”. Reading your post just makes me feel a little more “brave”. Thank you. Rosanne.

[Turquoisesummer in reply to Steakandkidney20]

Hi Rosanne (steakandkidney- love the user name, reminds me of my grandma who used to cook us steak and kidney pie which I loved until I realised there was actual kidney in the pie and i couldn't eat it anymore🤭),Thank you for your reply. I was feeling exactly the way you describe until very recently, I would describe it as drowning or wading through quicksand.. and every night dreading waking up the next day because I knew how bad the pain would be😕 dreading the rest of my life..and it still surprises me that even though it's still hard and I feel nowhere near "normal," I'm no longer dreading the next however many years, but feeling like even though they might be painful I can do it..🙃 I hope somehow things become a little more bearable for you, too! I understand how intensely unbearable this condition can be. And I'm grateful that my post might have given some hope or encouragement🙂 I posted because I realised how much better I have been feeling and remembered how awful I had been feeling a year ago, and realising the difference, having not known it was possible to feel almost ok, at least bearably😊, again, hoping it could encourage someone of they are struggling as much as I was not long ago🙂

All my love and best wishes xx

[Steakandkidney20 in reply to Turquoisesummer]

Hello Summer, thank you too. You should be an inspirational writer, you’ve got it! Positive, emphatic …. AND a dog friend! I’ve got one too, his name’s Teddy and he drives me nuts, he’s so naughty! But I love him … and that’s what keeps us alive. Please everyone don’t go out and get a dog, necessarily, just love something …. start with yourself 💕

[Turquoisesummer in reply to Steakandkidney20]

Aww you're so sweet! Thank you 🙈Yes, dogs are the best!!🥰 Haha that's awesome..🤭 and thank you for your beautiful words...💗 You are so right, start with yourself..😋

[Jaycee18]

Love to see some positivity. Need some of those vibes today.

[Turquoisesummer in reply to Jaycee18]

Thank you lovely💗 I'm glad my post may have helped or spread some positivety. I used to get either inspired or discouraged by other fibro warriors positive posts, depending on my current state..🙈 but I looked back and realised how much differently I feel and hoped that maybe it could help someone.🙃 God bless, hope you had a lovely day.

[fabpup01]

It's so nice to read something positive for a change. I go out daily with our dog and feel as though this really helps both physically and mentally. I hope this keeps going for you long term

[Turquoisesummer in reply to fabpup01]

Thank you so much. I hope you find improvement, too! I was worried it wouldn't be a helpful thing to post as I would sometimes feel encouraged but sometimes discouraged by hearing positive things from other fibro sufferers. I do hope to somehow inspire and im grateful you weren't discouraged by my post🙈 dogs are the best, and so supportive when we're not feeling our best🥰 I think they really sense how we're feeling and always offer love and kisses or hugs🥰 I do think my doggo has been my greatest support and inspiration😊 she's amazing as I'm sure your pupper is too😋

[tiglo]

Hello

thanks so much for the advice and positive post. I’m new to the site. Can you advise how you got the disability pension in Australia? I think having that and no work stress would help me heaps with the recovery you describe. I’m really struggling with work and the fibromyalgia and menopause too.

[Turquoisesummer in reply to tiglo]

So sorry for the late reply! Sure no worries 🙂 it can be hard to get DSP, so don't be discouraged just do whatever you can if you need it. I applied once before and was rejected as they told me that fibro wasn't permanent..🙄. I hope you can get it and that it does allow you to start to recover, too.🤍 But what you have to do is show evidence that your condition is not temporary and that you have tried every available treatment and those treatments haven't been effective enough that you can continue working. When I applied the second time I had been off work for almost a year and could hardly walk, couldn't shop or cook, couldn't shower every day, a shower would take me 3 hours and it was basically all I could do in a day. I had to get evidence from my doctor/specialists in the form of letters stating how my condition affected me and what I could/couldn't do. Then Centrelink had an assessor call me and assess me over the phone. I was lucky to have a very kind and understanding assessor, an OT, who works for the NDIS and advocates for people with disabilities, and he told me I definitely needed support and hopefully Centrelink would approve my claim, and that he would do whatever he could to get my claim approved, but he said they may not regardless of what he tells them. Centrelink have a scale you can find on the website that they use to assess the degree of disability for DSP. You may be approved for a part pension or full, depending on what they assess the severity of disability as being, and you may have to work part time (I think it is from 15 hours a wk) to receive DSP depending on the severity of disability. I hope this helps in some way. You can start a claim online and then get letters/reports etc from doctors and/or specialists that support your claim and provide evidence of what you're going through.All the best! Hope you're doing ok❤

xx