Karen’s Story

Here Karen tells us her story andΒ goes into more detail about what it is really like to be her. I feel privileged she is sharing this story. I can relate to her in a lot of ways. I am also learning a lot from Karen the more I get to know her. Without this site we would of never crossed paths….

As I’ve previously said, I’ve had Fibro for 23 years… Initially diagnosed with ME and subsequently Fibro to which most people including myself was very unfamiliar with. My GP new very little about Fibro ( fatigue and pain, therefore “pace yourself”) I didn’t, why would I? What is this “thing” I have? Hardly anyone was familiar with “it” unlike Diabetes or Arthritis so I had a few untoward replies which left me feeling and thinking ” I haven’t got a ” proper” illness. So I continued life in the fast lane but feeling absolutely awful ( fatigued, pain throughout my body, not to mention a catalogue of additional symptoms I was afraid to mention, “just incase” they weren’t “real” Moving on… Without really educating myself on Fibro ( reading a few bits here and there ) I continued bringing up my 4 children ( which are my world) to the best of my ability. My first Grandson arrived and I was so excited and happy that I would be helping out with childcare 3 days a week. Why wouldn’t I? I felt ” ok” although still knew I wasn’t “right” Shrugged it off, excited to be looking after my “little Munckin” My youngest Daughter Katie was 9 yrs old then. Long story short… Body gave way and I collapsed… Eventually got back on track and continued to raise my family ( reluctantly reduced to one day for my Munchkin) Looking after them all is what I love and enjoy most but deep down I still knew I wasn’t feeling “right” A lot happened from then to now…. Katie, my Daughter was diagnosed with Ulcerative Colitis, excitedly welcomed 2 more beautiful Munchkins ( girls ),My Husband together with our 2 Sons started their own business, which I was so extremely proud of them for. Katie’s health continued to wax and wane with frequent hospital visits. In the meantime both My Mother and Father-in-law became seriously ill and sadly passed away.I coped as I always did… Our 4th handsome little Munchkin arrived and excitedly I offered to help with childcare. Still not feeling “right” and with Katie back and forth hospital I plodded on. She was my priority, she was one who needed looking after… Continued with my everyday life and got on with things ” as you do” until Xmas 2017…

This Post Has 7 Comments

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    Hi Karen! Thank you so much for sharing your story with us! And your daughter too, ofcourse πŸ™‚ It’s wonderful for me to be able to find a place here to share and learn about fellow Warriors. I live in the Netherlands and it’s terrible here concerning any invisible illness. It is still not accepted here as an illness, nor can I find any groups or proper internet sites with info. Thats why I started on Instagram and than God I did!! I seriously started thinking I was quite mad here…The only person who takes me seriously is my new GP, otherwise I would still be in therapy as all the other docs and specialists here insisted I was 100% healthy, should be so grateful and have my head examined…enter years of therapy! :((( Now ofcourse I know better. It only took 50 years…good grief! I was already showing symtoms as a baby. After my huge crash, I spent 3 years immobile in bed, being bullied by my employer and then by social services, to get out of bed and start recuperating seeing I had no medical reason for being ill and in bed. For awhile I seriously considered suicide as my only way out. Long story short, with my husband beside me, we fought, hard, and never gave in. Warriors in arms!!!

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      Hi Miki, lovely to hear from you. So sorry to hear you’ve been so poorly for so long.Unfortunately, these “invisible” illnesses take rather a long time to receive a diagnosis, if any for some unlucky people. Usually a series of blood tests are carried out and if there’s nothing untoward found and te person in question is still experiencing certain symptoms, then an elimination process starts. It’s very good to hear you have an understanding GP. This is absolutely paramount and necessary for you in determining what is making you so poorly. Before we go any further, as I feel it’s important to my reply to you… Has your GP made a diagnosis or a referral for you? Your answer to this will give me the knowledge I need for any further help I can give you. Hope this helps so far? Please don’t hesitate to get in touch with anytime. πŸ’œ

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    Hi Karen!
    Yes, my GP did make the diagnosis of Fibromyalgia in my case, and its documented.
    Since then life has become alot easier in that area ( medical circles ) Stay clear from social prying and have no more need to explain myself or educate every person I meet who insists they need to know all the in and outs and then have the nerve to ask me if I’m any better when they next see me. Actually, I think it’s just because they dont know what else to say and are just being polite, so I just politely reply; Yes, I’m feeling much better, thanks. Moving on. I prefer to spend my spoons on people who do know and understand. I find it much more important to stay in our group than trying to make the outside world understand. It’s not worth my energy. Besides, they can’t do anything for me anyway. They have no inkling of what Fibromyalgia is all about and I dont have the energy to explain it to every Tom, Dick & Harry…and even if I do…lol…those blank faces tell me they have NO IDEA what the heck I’m saying!!! So…But it’s ok now. Being on Instagram has been a lifesaver πŸ™‚ Finally finding out I am far from being alone is more than I need to fight this thing and all the ignorance and injustices surrounding it <3
    Thank you so much for getting back to me, I really appreciate your kindness and time xxx

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    Hi Miki, glad to be of help. Glad to hear you have a diagnosis… You can now learn to manage your condition. I’ve never done anything like this before and never, ever thought I would as I’m quite a private person, so sharing parts of my life with Fibro on social media is huge for me, but at the same time knowing, if I can help someone who is suffering and struggling with a chronic illness, then it’s what I have to do. Ask any questions you like, however, I’m no expert, but I do have years of experience living with it. As for anything relating to excercise, etc please contact Amy and she will point you in the right direction. πŸ’œ

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    When Freaky Freda decides to flare, bring it on,I won’t despair!! My battle with you has just begun, so brace yourself Freda, I’m armed with a gun!! πŸ˜‚πŸ˜‚

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    Cheers Amz, humour helps😍 Big shout out to you Amz Curtis, for your inspiring menu and your endless efforts in producing such a lovely array of help and support on this fab little website.πŸ’œπŸ’œπŸ’œ

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