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How do you honestly . . . keep going?

Posted by swagmaster64 @swagmaster64, Jun 16 6:24pm

Hi all -
I have been deeply struggling with my physical health for years, and I am only now finally starting to get some answers. My doctor diagnosed me with fibromyalgia in March of this year, following a postural orthostatic tachycardia syndrome (POTS) diagnosis from December of last year. I have a slough of mental health struggles, have battled on and off with addiction for my entire adult life, and have been so sick physically for the past half a decade at least. I know a lot of you here, based on other posts, have been at this for decades and more. So, honestly, how do you keep going? How do you wake up in pain every single day and tell yourself that this is worth it? I can't have kids, a lifelong dream of mine, and I can't work, and I really don't even know what to do with my life anymore. I feel my life is lost, and I feel like every day is an act of survival, not one of truly /living/. I want to be happy. I have three wonderful cats and I am freshly married to the love of my life, but I feel so much despair at the prospect of being alive for 50 more years. I take the meds, I do the exercise, I eat in a calorie deficit. I do all the right things and still feel awful and in pain every single day. I genuinely feel useless most days. And I know it will only get worse as my body gets worse. How do y'all keep doing this? What would you tell your younger selves to motivate them to keep trying? Thank you to anyone who answers.

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

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guineapiglover | @guineapiglover | 2 days ago

We have an online system called Patches which is an alternative to ringing the GP surgery to get an appointment. If the appointments are used up for the day you can try again in the next morning. The online system is quite good if there's space for an appointment as you can put in your symptoms and opt for phone call / text/ email in person appointment depending on your needs. The only trouble is phone call can be any time even though you can add what times you're not available. The waiting time to get to see an actual doctor varies in time, I was offered a same day appointment but you can wait several days if not longer. I was really desperate and had fever from UTI and fibromyalgia pain and ongoing slipped disc pain recently .
I was able to speak to the receptionist who managed to fit me in quick. The NHS has different community hubs and that means I can visit any medicus health partners surgeries that are in my local area of north London. We can also choose our preference of doctor within that trust but it can mean a much longer wait. I think having an ok service helps me to keep going. Unfortunately though the help isn't perfect. I have waited over a year for pain consultant and neurology in hospital. Also I saw a practitioner associate a few weeks ago for my suspected UTI. Urine sample didn't go to lab and I ended up having a fever and seeing a real doctor over a week later after crying down the phone to the receptionist in GP 's office. After all this my GP ( one of many different doctors available) sent me up the hospital for a suspected appendicitis when it turned out to be a UTI after all. It really feels like an uphill battle sometimes, I totally get it when people say "how on earth do you keep going "
As I am writing this after a lovely week in Cornwall I am beginning to think my infection wasn't cleared as my symptoms are returning ..
😒Here comes another fibromyalgia flare... It's definitely not my Guinea pigs causing my issues, they are the best medicine come to think of it. Yes that's how I keep going, it's my little piggies!

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lylii | @lylii | 2 days ago
In reply to @jakefix82 "Diagnosed in my mid-thirties, I’m now 77 and feeling low-energy all the time. I live alone..." + (show)
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Diagnosed in my mid-thirties, I’m now 77 and feeling low-energy all the time. I live alone and manage - still drive, buy groceries, clean my home. I don’t entertain, so I’m slower at getting things done - just finished with the last of putting away Xmas decor sitting on the steps to my “storage”bonus room over the garage…I don’t like climbing steps with bone-on-bone OA in one knee. It’s painless, thankfully - it’s lack of full strength in that knee. I do go to the Y several times/week and use the low-stress recumbent stepper to keep my thigh muscles strong. Just started PT to address poor balance (I use a cane).

I’m resistant to using a walker, though my legs are shaky and PT believes a walker is better for me. My legs have always been tired with fibro and when I was younger & could walk fairly well, I would end up with post-exertion malaise, feeling like having the flu.

So, I would like to go to community festivals, etc - but mobility solutions are my issue. Looking for ideas. I have a mobility scooter that I rarely use (the Atto) - but with my balance issues, I need to lean up against the bumper of my Honda CRV while putting its 2 parts together. I’m thinking of selling it.

Has anyone used a motorized (battery) convertible walker/wheelchair? I’m looking at the “Wheelator” - which is for those who don’t need a wheelchair full time, but something that allows them to be independent while, say, at the mall or a festival. The idea is to be still able to use one’s legs for walking - using it as a walker - until it’s just too difficult (my muscles stiffen when tired), and then use it as a motorized wheelchair. I think it answers some of my issues - just still wondering if I could load it in and out of my vehicle.

Check out the Wheelator on YouTube - there are lots of good info videos on it. Let me know your thoughts. Thanks!

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@jakefix82
Hi - I had never heard of the Wheelator, so I looked it up. Very interesting! It weighs 36 lbs, so I know I would not be able to lift it. Can your Honda CRV handle a small lift on the back? I know not all vehicles can. My Mom had a scooter, which was supposed to be lightweight, but I struggled with getting it taken apart and put together even back when I was in my 40's.

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jakefix82 | @jakefix82 | 22 hours ago
In reply to @lylii "@jakefix82 Hi - I had never heard of the Wheelator, so I looked it up. Very..." + (show)
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@jakefix82
Hi - I had never heard of the Wheelator, so I looked it up. Very interesting! It weighs 36 lbs, so I know I would not be able to lift it. Can your Honda CRV handle a small lift on the back? I know not all vehicles can. My Mom had a scooter, which was supposed to be lightweight, but I struggled with getting it taken apart and put together even back when I was in my 40's.

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@lylii This power wheelchair might work - Pride Jazzy Carbon 27X. Folds like regular wheelchair and there’s a tik-tok reel of a woman using handlebars to tilt it back on its rear wheels and leveraging front wheels up on to floor space behind driver’s seat. I used this technique with my late father’s regular wheelchair - putting it behind his front passenger seat on the floor space. Was easy, because there was no lifting of entire chair.

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lylii | @lylii | 17 hours ago
In reply to @jakefix82 "@lylii This power wheelchair might work - Pride Jazzy Carbon 27X. Folds like regular wheelchair and..." + (show)
Profile picture for jakefix82 @jakefix82

@lylii This power wheelchair might work - Pride Jazzy Carbon 27X. Folds like regular wheelchair and there’s a tik-tok reel of a woman using handlebars to tilt it back on its rear wheels and leveraging front wheels up on to floor space behind driver’s seat. I used this technique with my late father’s regular wheelchair - putting it behind his front passenger seat on the floor space. Was easy, because there was no lifting of entire chair.

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@jakefix82
Thank you! I will take a look at this!

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