Hi ( My Hope To Be Friends :-)x

Well life brings many good things to me, but also many bad

There's maybe times I'm happy, though often I'm quite sad

To look at me theres no pain in my face, not that you can see

I keep it well hidden for only few will see, Sympathy is not for me

Compassion, caring & sharing, I open my heart to all before me

I'm a 49yr old woman, who lives in a beautiful part of the country, I obviously cant enjoy it as much as I used to, before things progressed, I do not have a strong pain tolerance, WIMP maybe ? We each have our own way of coping, what works for another may not work for some of us, I have found that we can learn so much more from each other and maybe we may even stumble upon some laughter and tears along the way, even dear friendships, I find from my experience with pain, I lost touch with many friends, through my choosing of course.

I felt it was easier for them as it was for me, the same old question " How are you feeling " I'd answer

" Yeh, I'm ok , just getting on with it " I feel its also just as difficult for those of us that have partners or friends who do not have the first clue about how 24/7 pain can affect you, through no fault of their own, and bless those that do try to understand and to look after those whom they love, its as much pain in their hearts as it is in our bodies.

I have Osteoarthritis, Fibro, Depression, COPD, Stomach Problems, Heart (under investigation)

Had Anterior Cervical Decompression Fusion done on 6th June 2014, more surgeries to come

on spine. Have had a few more surgeries since the age of 28 onwards nothing major, couple of

cancer scares, but hospital dealt with quite quickly, thank goodness. GSOH Still intact as yet !

Please feel free to E- mail, comment, share, vent (not at me personally) that'll cost extra...lol

anything you want to ask, I just wanted to introduce myself first, before asking advice or finding out any information that someone maybe able to help me with. I have read some very inspirational stories on here, they have truly touched my heart.

Healthy hugz & Wishes

Cellez77

18 Replies

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  • Hope things get better soon, so you can start enjoying your part of the country! Also, where is that part?

  • Hi grmv

    I stay in the Scottish Borders not far from Eyemouth. Thank you for your message, I hope you are well?

    If you would like to e-mail again , please do. It would be nice to know more about you, not prying, only if you wish to share.

    Best Wishes

    cellez77

  • Hello Cellez, nice to meet you. You have a way with words, saying what some of us feel.

    My pain has opened so many doors, given me the opportunity to explore myself and my condition, I've discovered talents I didn't know I had, and the people I invite into my life are inspiring and fun.

    Few understand it, but genuinely caring people don't need to understand, they just ooze compassion, and realise that focusing on my pain, lack of ability etc is a negativity I can do without. They sometimes ask, but I soon gloss over it giving the barest of explanations, because, I don't want to dwell on it. I faced it head on, teased and tormented it with alternative therapies, it had no chance to hide behind medication. It was open and brutally honest, and now 12 years later, I can say the pain is truly tamed, I know all it's little likes and dislikes and have managed to create a reasonable existence between the parameters. There's no secret really, just to embrace change and explore within yourself.

  • Hi Zanna

    Nice to meet you, thank you so much for your kind words. I think you have a great way of explaining something that many of us sometimes become overwhelmed with. You seem to me to have a natural ability to put things into perspective. You've been through an awful time, but I so admire your strength, stamina and your way of turning a negative into a positive. You have given me a new belief and I thank you for that.

    Best Wishes

    Hugz cellez77 x

  • Not my doing really, just had some very good therapists on the way. One said - you can be miserable all day because you have pain, but nothing will be achieved, or you can decide to be happy despite the pain, and something will be achieved, it may be a tiny thing, but will mean loads to you. That was my turning point.

    Gracie, I don't hide it, I just don't focus on it. Once you get used to saying no to people it's quite easy. But then, the follow up is to offer an alternative solution that perhaps you could manage, and maybe friends and family could do some of the time to include you. Like going out for meals at lunchtime rather than in the evening, going to matinee cinema and theatre.

    What can family do? My girls used to get quite distressed Seeing me in pain when they were younger, so I came up with holding hands - they understood how sometimes things make you scared but if you hold someone's hand, you're not alone. They're huge teenagers now but still hold my and each others hands. Just being and being there goes a long way.

  • Hi there not posted on here before but always reading others views and ideas.I feel exactly like you i don't like to dwell on the negative even with close family. If you were to tell them what life is really like it would upset them too much but because i hide pain so well people don't make any allowances for it and i get no sympathy.My own worst enemy really!

    I too have lost friends quite often i let people down just because I'm too exhausted or ill to meet them but I don't tell them the reason so they think I'm unreliable.I have had RA and fatigue for 16 years now and like you I have found my own ways of coping its all you can do really.Just try and get the most out of any good days.Reading everyones posts on hear is very comforting for all of us i thinkxx

  • Hi gracie47

    Nice to meet you, thank you for replying. It is quite difficult to try to protect those closest to you from knowing how bad things can really feel at times for you, but as you say you don't want to upset them, yet sometimes I feel they know but aren't sure what to say or do ?

    As for friends, I too have felt I let them down, but then I realised I wasn't letting them down, I just wasn't being honest, so I decided to say exactly how I felt if I couldn't make lunch or any other event for that matter. Never feel your letting anyone down or that your unreliable, Pain can cause so many symptoms both physical and mental, you never know how your going to be from day to the next, we go through something that does take up most of our energy, with little sleep on top of everything else. I went to a Pain Centre in the UK in 2002 for a month, I did learn quite a lot from the pain course I was on and also conversed with other people who, like myself had there own pain issues, we had supervised exercises, hydrotherapy, tai chi, relaxation techniques and group discussions or one to one if you wished, I got a lot out of this course and came home feeling positive and knowing certain ways of coping with my pain especially when there was bad flare ups.

    I am here if you would like to talk more, It is sometimes easier knowing that we do have someone out there that knows what it's like to be in a similar situation, someone that cares, our families do care but its difficult for them to know what to say or do, it also hurts them as much as us, as I say I am here if you would like to talk a little more about everything and anything really, I find that one thing I never let pain take away from me was my sense of humour, No matter how bad things get. Of course it is easier said than done but if we let pain take over completely we would lose our identities, our personalities and all the things precious, especially life itself.

    Hugz & xxx

    cellez77

  • Hi this is my first time here. I have been reading other folks messages for a little while and I have taken great comfort that there are others out there like me who don't like to draw attention to their pain and do the "brave face" thing, just because it's easier than trying to explain how you really feel. I do get tired of people saying "but you look so well, you don't look like there's anything wrong with you" I was diagnosed with RA in 2007 and it's been a really rough journey since then. I have gone from being very active, enjoying mountain biking, swimming, walking etc. to being unable to wash and dress myself without help, even needing to resort to a wheelchair during flare ups. I try not to talk too much about how I am feeling because truthfully I don't think people really want to hear it.

  • Hi Littlefruitbat (love the name)

    Its nice to meet you and thank you so much for replying, I cannot even imagine what it must be like for you going from being so active , then being hit with RA, I also get the " Oh, but you look so well " It's difficult without a doubt, I used to be a great gymnast when I was younger, done dancing, swimming, horse riding, I was still doing dancing up until the age of 25, I had always had twinges in my back it started when I was about 18 and I'm now coming up the BIG 50...I would say about 14yrs ago it just came without warning, couldn't get out of bed without help, crawled to the toilet on really bad days, I sometimes wonder how I ever managed to look after my daughter who was 6 at the time, I did have a very supportive and understanding partner, obviously he worked all hours he could just to take care of us, then he died suddenly aged 30 in 2002. It was the worst time of my life by far, I often thought we are only ever given as much as we can deal with throughout our lifes, all I know is I had to get on with life, especially for the sake of my daughter. I look back now and wonder where the strength came from, but my mum always said I was a strong person inside.

    You can write to me whenever you want to, about anything you want to, I, for one want to hear you and if by any way I can help, I will. Please stay in touch, and know that I understand.

    Hugz

    cellez77

  • So sorry you have had such a time of it!!! I started having pain and fatigue at 27 and it's only gotten worse. I feel for you. I have fibro, ruptured disk's in my lower back osteoarthritis and no fat in the bottom of my feet. Falling apart as well. Now just had the scope's done and I have a fungus in my esophagus. The never ending story of our lives. Hope you are feeling as well as possible sweetheart!!!! Nice to have you join us!!! xxxx Mitzi

  • Hi mitziblue

    Thank you for replying, I am sorry to hear all that you have going on, to start having all that starting at such a young age, but when it comes to these horrible diseases, age doesn't count, does it ? It either starts gradually or just hits you like a bolt out the blue.

    Are they going to do any operations on your lower back that can maybe help at all huni ? As you say the never ending story of our lives, right enough. Please stay in touch and let me know how you are doing, Although we are all strangers, but we all have some kind of understanding of how pain can affect us, maybe we'll may all learn something from each other and at least give support to one another as we go along the way.

    Hugz

    cellez77 x

  • No, they said I shouldn't have it. I guess because of it's in the lower part. I'm just worried about my esophagus right now. I won't know anything until next week. I'm so sick on my stomach. Hope you are feeling as well as possible today. If I can help out in anything just let me know. I'm here for you sweetheart!!! xxxx Mitzi

  • You guys are really going through rough time.

    You are amazing how you are so positive when life is dark and bleak.

    Thanks for being so inspiring!

  • Where did dark and bleak come from? :) I guess looking in it must seem that way. It's very simple the way I see it, my body is broken, cannot be fixed so I have to find ways of refucing the impact,that will keep me on my feet for as long as possible. Afterall, this is the now. The future may have wonderful drugs that work, or ops that help rather than hinder. But I have to live in now, and I'm going to have fun, do things a bit more my way, and share my experiences, because, someone somewhere may try it, and benefit from it too. I am considered weird, nutter, someone in my peripheral life thinks I'm selfish (because I'm taking charge of my life), doesn't stop me doing what's right for me.

  • Hi bakersdozen

    Thanks so much for your kind words, Hope you are well ?

    Hugz

    cellez77

  • I am fine thanks!

    I love your attitude!

  • Hi thanks for the lovely reply it's great that we can talk to like minded people on here.I have a young child still and although hard work she really helps to keep me positive.I always push myself hard to do things and find this helps me to feel a bit more in control but have to be careful not to cause a flare.I just wish I had more energy it's frustrating.Have you found any kind of exercises which help was thinking of trying some yoga.Will ask if I can visit a pain clinic next time I visit the hospital sounds like that was really helpfulxx

  • Hi,Cellez17, So glad you try to enjoy life in spite of numerous problems. Compared to the list you give I am exceedingly healthy with only severe osteoarthritis in my back and knees. I do trust that things improve for you and that the investigations turn out in your favour. Contemplating nature can bring consolation and even joy no matter what our circumstances.

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