Yes, I live in pain every minute of every single day. It is the Nature of the Beast..
If someone tells you they have fibromyalgia or CFS/ME & are pain free, they are wrong. Pain free days do not happen. If someone is pain free they are either lying to you, lying to themselves or they were misdiagnosed.
Like all Fibromites, I have pain every single day. Some days is really great at 1-2/10, but it has been as bad as 8/10 for my kidney stones. Lately, I’m typically at 3 or 4.
The best I’ve been is a 1.. but a zero? No I have zero pain or painfree days.
So, do I wake up in pain? Yes.
Do I walk my dog in pain? Yes.
Do I do groceries in pain? Yes.
Do I write my blog posts in pain? Of course.
Do I exercise while in pain? Ha – tricky one. Yes, if I can do so without triggering a flare.Do I snuggle up & watch TV or movies in pain? Yes.
Do I socialize in pain? Yup, otherwise I’d be a hermit.
Do I participate in personal adult extra curricular activities while in pain? Unfortunately, yes. There is 2 posts about this topic in the works.
Do do my Scouting in Pain? Yes, I do. Only one person in each group has any clue about how I’m doing Raksha 13 & I have become good friends through Scouting & Rainbow I’ve known grade 8 or 9, but through guiding & scouting.
Don’t I take meds to help with the pain? Yes, but he important word there is *help*.
Now think about this.
Would you be able to handle never-ending pain? Knowing that it will never, ever end? That it could flare-up & knock you out with, if you’re lucky, only a moment’s notice??
Could you handle the negative prospects, knowing that most Fibromites do deteriorate? It means you will likely get worse, not better.
How could you handle additional fibro symptoms like debilitating fatigue matched with bouts of insomnia? What about a loss of cognitive function where you can’t remember silly stuff like the phrase “tug-of-war’ during a game of Pictionary with the kids. How about feeling useless cuz you are unable to help your kid with his math homework because you don’t remember how it works – all you can say is the answer is wrong, but unable to explain why, made worse cuz you had a partial scholarship in Mathematics.
What about the other “smaller” symptoms? IBS? Thyroid issues? Sjorgens Syndrome? Sleep impairment? TMJ? Reynauds Syndrome? Muscle spasms or reoccurring ‘Charlie Horses’? Costochondritis? Muscle weakness? Myofascial Pain Syndrome? Migraines? Allodynia (touch sensitivity)? Chemical sensitivities? Light, noise or smell sensitivities? Restless Legg Syndrome? Paraesthesia?
Admittedly, you won’t have all of these all the time, but they can spontaneously come & go without warning. But is that something you can handle, with the never ending pain & fatigue?
Very few friends can identify how much I’m in pain. My bff can usually spot it a mile off. My sister & occasionally my Mom can tell by looking at me.. I have other friends & family who have learned some of the more obvious signs of higher pain levels.
So yeah, I’m in pain, even as I’m snuggled up in bed, relaxing & medicated. I am still in pain. Always.
Could you handle it?
Tags: Allodynia, CFS, CFS&ME, CFS/ME, CFSME, Chronic Fatigue Syndrome, Chronic Fatigue Syndrome (CFS/ME), Costochondritis, Debilitating Fatigue, Fatigue, Fibro, Fibro Fog, Fibro Pain, Fibromyalgia, Fibromyalgia Pain, Light Sensitivities, ME&CFS, ME/CFS, Migraines, Muscle Spasm, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome(ME/CFS), Myofascial Pain Syndrome, Noise Sensitivitirs, Pain, Paraesthesia, Restless Leg Syndrome, Reynauds Syndromes, Scent sensitivities, Sjorgens Syndrome, Sleep Issues, Sleep Schedule, Thyroid issues, TMJ
Fibromyalgia 
June 30, 2021 at 11:10 pm |
No. That much pain all the time is terrible. You’re not useless for not being able to show the kids maths. It’s the consequence of your disease and there’s nothing you can do about it. But you’re still there for them in many ways and maybe you need to give yourself more credit for that. It’s especially more admirable in your case because you’re doing that while experiencing such painful agonies. Whatever you’re able to do is worth something and deserves appreciation. Hugs 💜
July 1, 2021 at 4:18 pm |
Thank You!
I don’t know that I’m useless – did I actually say that? I think I’m more frustrated. It’s something I used to be able to do well. I’d accepted I’d have limitations on my physical issues, but the cognitive ones I’m having more problems accepting .
July 2, 2021 at 6:47 pm
That’s quite understandable. It doesn’t even make sense to lose cognitive abilities like this, this isn’t the norm, so of course you would be frustrated. This is not how it was supposed to be. Like from your perspective it would probably be like, okay whatever I’ve got this thing now so pain is inevitable physically but at least my cognitive abilities are good. And when that falls it feels like your body/mind is betraying you. How’s a person going to accept and hope anything if whatever they take as theirs is getting snatched away. I’m really sorry. But if it helps you can talk to me, venting helps at times. I’ll not judge you or try to advise because I know those are not helpful. I’m a good listener. You’re doing really well and people don’t know or understand but you know what the struggle is like and you should give yourself credit for still being yourself. The way you handle it. That’s commendable. 🥺💜