Diagnosed aged 8 in 1990. Currently taking a break from being strong.

Fibrotortoise

Member
Joined
Nov 17, 2021
Messages
11
Reason
DX FIBRO
Diagnosis
01/1990
Country
UK
🐢As the title indicates, I am not new to FMS. However, I have never spoken about my experiences (to anyone who truly understands).

When I was a little boy my Dad lost his job. Over many years he struggled to get back in to steady work, then one day his knee started aching. It developed in to full FMS. He was in his 30s at the time and he was basically told his life was over.

Roll on a couple of years and I found it increasingly difficult to get to sleep, hurt all the time all over and felt beyond exhausted. After the 90s medical professionals diagnosing me as lonely, having growing pains and/or lying I was eventually diagnosed with FMS too (so my Dad and me were both liars, makes total sense).

By age 11 I had to quit school all together. At age 14, after 3 years of my parents campaigning and writing to our local MP to get me back to a school that could care for my needs I returned, in a wheelchair, not knowing anyone and with 2 years to pass my entire highschool education.

It was torture and yet I heard loud, unsubtle comments of "I've just seen him get out of his chair! There's nothing wrong with him!" From kids and teachers alike. At my lowest ebb till then I had a decision. I could end it all, go home and swallow all the medication in the house. Or I could accept that this was going to be my life, become and emotional tortoise and just plod on regardless.

Since I am writing this, it's clear I chose the latter option. I have had a lifetime of "just putting up with it" now. Suffice it to say, I got 8 GCSEs including a AA* in science, a single A level in Biology, a BSc and up until recently I was a manager in a pharmaceutical company.

I have always been incredibly hard on myself. I have always tried my best at everything I do without giving in to bitterness. But I found, after succumbing to a moment of weakness last year, I became a victim of bullying and harassment at work. I used up all of my energy and more trying to stick to my beliefs and protect those that report to me and just had to walk away. I didn't even have the energy to raise a grievance or fight my corner. I'm just done being strong...for now at least.

I'm not sure there is a point to my little story but now seemed like a good time to share it and here seemed like the right place.

Please feel free to share your stories of strength, frustration or a mixture of the two. It would be nice to know I'm not the only Fibrotortoise out there.
 

JacktheVoid

New member
Joined
Aug 14, 2021
Messages
6
Reason
DX FIBRO
Hey there Fibrotortoise!
I'm glad you decided to share here with us and reach out. :] I'm almost on the opposite side of the story, as I am only 19 and was diagnosed at 17 with fibromyalgia and other chronic illnesses/complications since then, but I heavily relate to a lot of the things you said. I may not be able to understand what's exactly it was like for you because of the age difference, but I really know where you're coming from when you say it feels like your entire life took a sudden turn and was completely different from what you imagined it/what it could have been.

I also deal with a lot of people not really believing it when I use a cane because I'm "too young" or I look "healthy" to them or that since I *can* walk shorter distances without a cane then I don't actually need any support at all and I must be lying or faking, never mind the fact that not using a can or wheelchair for lots of walking would result in tons of pain and fatigue.

From other traumatic events in my life that probably contributed to my health and from just the short time of dealing with all this, I can absolutely understand what it's like to just attempt to keep plodding on, slow and (somewhat) steady and feeling like you have to be strong all the time. I hope you believe that it's coming from my heart when I say you don't have to be. A lot of people act like saying we're "strong" for dealing with all this is the best compliment ever when the truth is we don't WANT to be this super strong amazing always putting on a brave face person all the time. It gets tiring having to pretend like we're not in pain, we're not tired, etc. so people who don't understand don't have to deal with their own emotional discomfort when we do show the reality of our condition.

I think it's good to remember that it's always okay to rest. It's always okay to take a step back from a situation and say "you know what? I don't have the strength or energy to deal with this." I too am very hard on myself. It helps me to remind myself that my life and other people's lives are different and if I need to rest or use a cane or take the elevator instead of the stairs (genuinely something someone got mad at me doing b/c I was taking it from "people who really needed it"), it's because I am a different person and my abilities and limits are different from theirs. I hope that in taking a break from being strong you let yourself recover a bit and find at least a little bit of peace. I hope something good happens today that makes you smile. :] You are definitely not the only Fibrotortoise out here.

P.S: I am also getting a degree in Biology! And also sorry if this is a bit scattered, Fibrofog is kicking my butt today, but I just couldn't not comment after hearing your words and understanding where you're coming from.
 

Fibrotortoise

Member
Joined
Nov 17, 2021
Messages
11
Reason
DX FIBRO
Diagnosis
01/1990
Country
UK
Hey JacktheVoid

Thanks for posting. It’s been 20 years since I started Uni but I still remember it vividly! As you correctly say, I often thought about what I could achieve if my body hadn’t sabotaged me but I was always quick to squash those thoughts when they popped up. It was a waste of energy to speculate (which we have precious little of!) and in any case, my pain has given me a level of empathy I likely wouldn’t have had if I’d coasted through life. I don’t think I’d want to be anyone else if you get me.

Really funny you should mention the walking cane haha. I eventually left my wheelchair behind and used a hideous, foldable walking stick through Uni. Many years after I graduated I was at a reunion party and one of my friends mentioned me being disabled. Everyone else said “Really? We just thought it was a fashion statement”🤦‍♂️

Also, thank you for the heartfelt words, they are very much appreciated at the moment. Just what I needed to hear after what was a very difficult move, given how hard I’ve tried to not let anyone down throughout my career. It really is OK not to be OK for a bit.

I have a lot of supportive friends and family who care for me deeply and remind me how strong I am but for once I just want to wallow in self pity for a bit 😁 I’m incredibly lucky to have a wife who is happy to sit and wallow with me for a bit before making a stupid joke and leave me to it.

I’ve spent a lifetime metaphorically slapping myself around the face and reminding myself that many people are far worse off than me. I have no right to feel bad. I used to live by the motto “a bit of pain never hurt anyone” which led to the dichotomy of having good self-esteem and motivation but also crushing guilt for any down-time and a total lack of self-compassion. I’ll try to forgive myself a bit more.

Best of luck with the degree, I hope you're excited! I’m sure you’ll smash it, no doubt everyone on the forum is 100% behind you. If you ever need to vent about the long triple lectures, evenings in the lab, tough field trips or some bigoted butthole of a lecturer, feel free to ping me a message. Most of all take some time to stop occasionally and be proud of yourself 👍
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,658
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Fibrotortoise, I am glad you found your way here. You get to moan and complain here if you want to; many of us do that. At the same time, we help each other, encourage each other, and at some point we stop the moaning and go back to working hard to keep going in spite of everything. It sounds to me as if you will fit right in!

I know what you mean about being very strong, but wishing you didn't always have to be. I relate to that 100%.
Sometimes I just wish there were one other person I could count on to feed the animals or bring me something to eat or vacuum the rug when I am flat-out. Everyone needs help at times, some get it and some don't, and so it goes.

You are very fortunate to have friends and family who will support you. Jackthevoid has had a lot of difficulty with people close to him refusing to take his word for what is going on and how he feels. This always makes me feel sad, and I also understand what that is like because I have experienced that in spades. My solution was to cut those people from my life, but I realize that is not possible for everyone and every situation.

Being hard on ourselves seems to be common for those of us with fibro. It might be because it is common for people with FMS to have been "type A" go-getters or athletes or very active people in one way or another and it's hard for us to accept that this cannot just be forced through. Here, we all try to encourage people to go easy on themselves. Which is not as easy as it sounds for many of us.

I always say it's important to give ourselves credit. When I was first trying to come to terms with my limitations, I made myself into a self-cheering squad of one. If I got ANYthing accomplished in a day I would tell myself I had done a really good job. It sounds silly but it helped. And now I am able, because of how I manage it all, to do more than I could at first and more than I thought I ever would again.

You are welcome here. We tell our stories and understand each other.
 

Fibrotortoise

Member
Joined
Nov 17, 2021
Messages
11
Reason
DX FIBRO
Diagnosis
01/1990
Country
UK
Fibrotortoise, I am glad you found your way here. You get to moan and complain here if you want to; many of us do that. At the same time, we help each other, encourage each other, and at some point we stop the moaning and go back to working hard to keep going in spite of everything. It sounds to me as if you will fit right in!

I know what you mean about being very strong, but wishing you didn't always have to be. I relate to that 100%.
Sometimes I just wish there were one other person I could count on to feed the animals or bring me something to eat or vacuum the rug when I am flat-out. Everyone needs help at times, some get it and some don't, and so it goes.

You are very fortunate to have friends and family who will support you. Jackthevoid has had a lot of difficulty with people close to him refusing to take his word for what is going on and how he feels. This always makes me feel sad, and I also understand what that is like because I have experienced that in spades. My solution was to cut those people from my life, but I realize that is not possible for everyone and every situation.

Being hard on ourselves seems to be common for those of us with fibro. It might be because it is common for people with FMS to have been "type A" go-getters or athletes or very active people in one way or another and it's hard for us to accept that this cannot just be forced through. Here, we all try to encourage people to go easy on themselves. Which is not as easy as it sounds for many of us.

I always say it's important to give ourselves credit. When I was first trying to come to terms with my limitations, I made myself into a self-cheering squad of one. If I got ANYthing accomplished in a day I would tell myself I had done a really good job. It sounds silly but it helped. And now I am able, because of how I manage it all, to do more than I could at first and more than I thought I ever would again.

You are welcome here. We tell our stories and understand each other.
That's terrible JacktheVoid, especially when you're so young :eek: I guess my family's support comes from my Dad also suffering from FMS. I really hope you have some nice people in your life. I've had a lot of "friends" come and go over the years, it's not too hard to "lose touch" with toxic people but it is stressful negotiating other people's prejudice.

Yes sunkacola, I'm definitely more of a helper than a moaner, thanks to all for listening :) I have to say that this community is not what I was expecting. I have only reached out to a support community twice. The first was an meeting group in 1994, where a group of ladies substantially older than me would give me cake and tell me about their grandchildren and the second was an incredibly depressing message board in 1999 over dial-up internet. It is inspiring to see things have changed.

You'll be glad to hear I woke at 12pm, applied for 2 job, did some housework and didn't beat myself up for not sleeping well, getting up late and not hitting my goal of 5 jobs haha.
 

Fibrotortoise

Member
Joined
Nov 17, 2021
Messages
11
Reason
DX FIBRO
Diagnosis
01/1990
Country
UK
Would a mod be able remove my other two messages at all? I was trying to be clever an draw a cute ASCII tortoise with my phone but the spacing was weird. I hit Edit to use an Emoji but it seems to have posted separate messages :confused:

I did ping a message over just after I messed up, I'm sorry if I confuse anyone 🤦‍♂️
 

Badger

Active member
Joined
Apr 2, 2021
Messages
72
I have a lot of respect for those above who have achieved in education despite their hell living with FMS, it's a huge drain on us and incredible to think it's even possible to further ones education. Crazy to think those of us suffering a chronic condition are the same ones afraid to complain and just get on with it. The very thing that hurts us most ends being our bread and butter. Who could even function like that. I'm very grateful that any fellow sufferers can explain themselves eloquently at all considering the poison that is Fibro.

I know two things for sure, firstly its cost me a great deal, secondly to read the stories of others is to know I'm not alone. That's something considering how isolating this 'thing' is.
 
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