My first blog post!!!

I have only just found this website and cant believe how thankful i am lol.

I am 23 (on Wednesday). I got diagnosed with Fibro 3 years ago.

It first stared started when i had a pain in my foot/toes and was convinced i had broken it! Went to a hospital in Manchester and they told me it was nothing to worry about. Moved home to Nuneaton and finally got another x ray, This confirmed that my metatarsal in my foot had crumbled.

This has left me in a lot of pain with each step. Over time i wanted to get all my aches sorted and was refered to a Rhumatologist. He diagnosed me with Osteoarthritis and Fibromyalgia. I have pain and swelling in my foot, ankle, knees, wrists, lower back problems, pain in my arms/elbows. I have had to stop working as a nursery nurse as my pain was a health and safety risk and getting up and working everyday for 9 hours was killing me! Also with fibro fog i was forgetting very important things!

With all of this has come depression, anxiety and severe anger issues. Saw the doctor yesterday and have been referred to a psychiatrist, Hoping this will help. * Fingers crossed*

On top of this my Partner has been registered partially Blind and Deaf recently. She also suffers with fatigue and severe depression. As you can imagine this is very difficult for both of us lol. Although she has always been deaf, She is loosing her vision and selfishly part of me is petrified that when i am physically unable to move and need the wheel chair that she isnt going to be able to help me or im not going to be able to help her!. Then what?!

18 Replies

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  • Hello and welcome Princesskim, great to have you with us! :)

    Thank you for your blog and for explaining your situation with us. HAPPY BIRTHDAY for Wednesday, I hope you have a really lovely day! :D

    I am so sorry to hear about your partner's condition, that's really tough for both of you. It's natural you are going to worry about yourself as you aren't well either. It's perfectly understandable. Have you been told you will be unable to move and that you will need a wheelchair. If no-one has told you this, it won't necessarily happen. There is no guarantee with Fibro that you will end up in this situation. Your Fibro won't necessarily get worse, it may remain the same. Not everyone deteriorates to that degree.

    I am sure visiting a Psychiatrist will help you, you will be able to get a lot of your concerns off your chest which is always cathartic.

    Try to take one day at a time and not worry yourself too much as ultimately this won't do you any good at all and then you'll be more poorly.

    I hope you feel better and more positive soon and that you feel more able to cope. Take care and please know that we are always here for each other to help and support where we can. A problem shared is a problem halved so they say! We are always here to listen, help and advise where we can. Remember we are all in the same boat here, we all understand. :)

  • Awww thank you!

    Have my 2nd ESA medical on Tuesday though! They did arrange my birthday at first but the kind man on the phone agreed it wouldn't be fair to put that stress on me on my birthday lol! :)

    I already have what i call wheelchair days but luckily i haven't for a while and i am hoping that it will stay that way for a little while longer! But finding my kness and feet are giving away more and a lot weaker and somedays rely on crutches. Stairs are awful and we currently live 2nd floor flat!! ( Moving soon we hope!! )

    This seems like a lovely site, Ive just been having a read through. So glad that I came across it! Think its so nice to read from people in my boat. Often feel friends and family don't always understand and it can be a very lonely ride. Often have my nan say its like im older than her and to pull myself together and i don't need all them pills i'm taking lol or my younger brothers punching my arm :( Very painful! lol :(

    Lovely support network <3 cant wait to get to know people.

    xxxxx

  • Hi, princesskim :)

    Welcome to the site. You seem like a lovely caring, and sensitive person - so its great to have you here and hope we can speak soon.

    I was a little down last night but I'm feeling much better today, thanks to this community. As you say, everyone on here is lovely, warm and compassionate.

    Happy Birthday for Wednesday ! :) I've not long celebrated a birthday myself - turned 18 a few weeks ago.

    I've actually got brain fog at the moment so I can't remember what I'm saying - lol. Take care.

    Gentle Hugs, Fay xxx

  • Hello Fay :) Happy Birthday also for a few weeks ago!!! You are young, How to you cope just carrying on... Sometimes i find it so difficult to accept that something i studied for 3 years i am unable to do because of this illness and so early on in to my carer!

    Thank you by the way, thats really sweet of you, Have just been looking through your posts actually and you yourself seem lovely! Well so welcomed already lol!

    Sorry to hear you was feeling down :( Its awful isnt it, Been having a rather tough time myself over the last few weeks have completely worn myself in to the ground but reading through all these blogs and questions its really been inspiring and don't feel as lonely!

    Gentle hugs back :) xxx

  • Thanks for the message and the Birthday wish. :) Its good to hear from you- you seem like a lovely person as well. What did you study for 3 years? I'm interested to know. :) I still have to decide what I'm doing after sixthform (I'm a year behind). Understand that you never know what might happen- You still might be able to get something from what you studied- theres always hope- even against all odds. :)

    Yeah. :( Its hard having it and being young. I was.. only 15 when I got my first symptoms. It was horrible and scary waking up in the morning feeling my body had been pulled and twisted, not knowing why- frustrating when I looked fine and no one believed me. I have it mildly compared to some people, so I realise I'm lucky in that respect:) - but it still pulls me down when I see all my friends look like they are having more fun than I am. Fog stops me from saying what I really mean and this pulls me into a depression, as well as causing me frustration. And I get annoyed with myself when I can't convey with words how truely grateful I am to be here. Wrote a blog last night saying how greatful I was to everyone. I put in a lot of effort battling against the fog to get it done until it got so late I don't know if anyone saw it?

    Thanks so much for your kind, comforting words- I really appreciate it. I agree with what you say, reading through all the blogs and comments here is really inspiring and comforing. Its good not to be alone.

    I hope you, yourself feel better soon - and I'm sorry to hear you've had a rough time recently. Hope to speak to you soon, take care, and rest a lot. :)

    Gentle hugs, :) xxxxx

  • It's lovely having you here Princesskim! Here you will find friendship, info, support and lots of experience from fellow Fibromites! There's always company too, so you'll never feel alone here either!

    If you have any queries please don't hesitate to ask! Happy to help! :) :D

  • Morning Princessskim and welcome to a lovely site. It sounds like you and your partner having rather a tough time of it I do hope things get easier for you both. I think because we all suffer the need for comfort it is here on site. I found that many of us experience exactly the same pain and problems we gain comfort from each other - It is great to know there are others in same boat it seems to be a large life raft- take care enjoy the site I do x gins

  • Hi Princesskim

    I think we all gain from this site & can share experiences, ups & downs & comfort each other.

    We can laugh or cry & not be judged. That to me is the most important thing. You are not alone any more, we understand.

    Wishing you a happy birthday for wed. ( would send message on the day but I will have forgotten by then!!!!) Damn fibrofog! lol Gentle hugs to you & your partner.

  • awww good morning everyone and thank you lovely to wake up to lovely messages!!

    I keep forgetting its my birthday soon! It wasnt till my friend reminded me last week! Now ive been keeping track! lol Hope we are all feeling ok today :)!

    Here a little question and not sure if its fibro fog but i have no concentration, Ill be in a conversation and just blank off! Please tell me this is normal lol im starting to feel like an ignorant meany , Think its hard to watch things on telly and then my partner wants to talk about it and i have no idea what happened lol!! xxx

    Gentle hugs :) xxxxx

  • Hey princesskim thought i'd drop by and say hello and welcum to the fibro family :-) im sure u will find we're a very understanding caring and supportive bunch. Dobt be afraid to ask questions seek info or even let loose wiv sum anger, dispair or moments of self pity; we all hav em nd this is a safe space for letting out ur emotions to those who share your condition. Fibro is a horrible illness which attacks us in a variety of ways trying to rob us of both our physical health and at times our very sanity. Staying positive, taking babi steps, celebrating our victories however small and trying to find a balance in everything we do are i believe our main tools in the fite back against this illness and if we can find a little bit of humour in our situation then fibro wont beat us. Try not to look too far ahead in relation to both u nd ur partners health situation take each day a minute at a time nd remember should ur worse fears become a reality there are always support options available to us in the form of health professionals, caring agencies, support group, family & friends. Take care xxx

  • Hi princesskim, Happy Birthday. I am sorry to say that lack of concentration is part of the fribro. It can be very embarrassing when you do go blank in the middle of a conversation. I have lived with fibro since 2003, 10 years now and those blank epasodes have been the bane of my life. It does stop me holding any conversation with people I am not close too. I do tell my friens/family that I have forgotten what I was going to say, and laugh about it together. (Then a while later I might remember and of couse they will have gone by then!!!!!) As a result I ended up not talking to many people and my confidence as rockbottom. I had a lot of councilling and eventually went of a pain management course and an Expert Patient Course, both of these course helped me be in control of my fibro and give me my confidence back. So I do explain to people that I am with, that I do lose concentration sometimes and that I am not being rude if I forget their names or something about them that I should have know, I feel very uncaring when it happens, so now I do explain and hope they will understand. Fibro does narrow ones world. When you have fibro it is life changing. Talk to your surgury about the Expert Patient Course, I found it invaluable and it gave me a greater insight into life with limitations and tectnequics/tools on 'how to cope with situation and make life happier for yourself. I hope this makes you feel better (I find knowing I am not the only one, and there are people out there in the same situation. Not that I would wish this on anyone!!!!) Take Care of yourself. Gentle hugsxxxxx

  • Hello Princesskim and welcome to the site. Happy birthday for Wednesday:-) I can't believe what you are having to deal with at your age. I thought that my situation was bad at the age of 33. I too am struggling to work and I am trying to explore all possibilities. I understand and empathise with the strain you and your partner are under. At least you have each other and now you have found this site you have help and support at the click of a mouse. Take care now, gentle hugs.xxxxxx

  • Hello Princesskim,

    Welcome to the site :-) .. I've recently joined too and so glad that I have - Everyone is so supportive and understanding, it's good to know that some people are experiencing the same thing!

    I'm 22 and also finding it hard to work, study and have a social life, just so exhausting!

    Take care x

  • Hi and a very warm welcome to you and so sorry about your partner what a time you are both having buyt the main thing is you have each other and together you will be stronger and you will help each other through on hrer bad days you will be there for her and vise versa . it is no good worrying about if you get worse or she gets worse as it wont do either of you any good dont plan things like that just get everyday and enjoy that day together and do what you can that day just cross each bridge as you come to it or you will bog yourselves down with a load oif stress and anguish etc

    anyway i am glad tht you have found the site i am sure you will gain alot from being on here you are not alone or going mad that is the main thing to remember lol

    oh well you take care of yourself and your partner and hope to talk to you again soon love diddle xxxx

  • Hello there princesskim and huge gentle hugs to you and your partner. My goodness, you are both really going through it at the moment, life must be a huge struggle for you both with these problems but you seem to have a good strong relationship and that can be a blessing when things get too tough. I love this site, everyone is so friendly and helpful and no matter how low youre feeling or confused sosmeone is always there with words of support and they know wxactly how you are feeling cos usually we feel the same at times! It will be difficult for your nan to understand your fibro cos in their generation things like this didnt exist (or they think it didnt i suppose people just suffered) but i imagine that makes you feel guilty or sometimes you even start to question yourself, i know i used to, but i dont any more, i know exactly how ill and in pain i get and no one would dare to challenge me as fibro can make me feel pretty angry sometimes lol! Finally i wish you a very happy and pain free birthday for Weds! Take care...much love...Charlii xx

  • :) Awww thanks guys!!! Lovely reading all them message. Your all so lovely! Why did it take me so long to find you all!! lol Things are tough at the moment, I am trying to take one day at a time but im a bit of a freak and like to have complete organisation of each day haha! Although i am trying to let it go a little more as after all these years ive realised i just keep disappointing myself! All will be fine in the endddd lol :)! Got to keep positive i guess and luckily i havent felt so down since joining this site :) So thank you guys xxx

  • It's a pleasure having you here Kim. I think you have unearthed the secret to coping with Fibro, take one day at a time, one problem at a time. Take care. :D

  • Welcome to the site, it is brilliant. I hadn't realised there were so many younger sufferers. Good luck with your ESA assessment and hope you manage to have a nice Birthday xx

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