Hi everyone,I've just recently starting using this forum again as for the last couple months I've experienced a lot of mostly good days where I've been able to go out with my two kids and do things.But alas now iam in bed aching all over.I put the good days down to sunny weather and Bowen therapy I've been having.Yesturday as I was driving I was thinking about how the fm makes me feel like I've aged prematurely,not on the surface but inside.The way I feel is how I would expect to feel in my 60-70's,iam 39.And it brings with it a lot of sadness,loneliness and loss.I hear mums talking at my sons school where he has just started in reception about today they need to do their housework and going to work and it makes me feel so separated from the normal world as I can't do those things and I envy them for being able to do those things.I envy the mums chatting to each other and that they have friends as I find it so hard to socialise and don't have any close friends.Oh well,just wanted to get that off my chest.Iam actually thinking about trying to see if I can manage some voluntary work for a couple hours a week now my youngest has started school.I miss being able to help people,I used to be a qualified nurse but I know I will never have the choice of being able to do that again.Does anyone else do any voluntary work?Hugs to you all and sorry for long blog xxx
Having fibro is like premature ageing - Fibromyalgia Acti...
Fibromyalgia Action UK
Hugs Haribo <3 love .... yes this i am still coming to terms with like you I am so sad to leave my nursing job ....i miss the patients colleagues the shifts as it kept you busy lol ...the nights out with them all of it ..... I haven't seen any of them since the day I left and feel lonely like yourself .... I worked for nearly 40 years in the NHS and the day I left was the day my life seem to end ......believe it or not they dont have any concept of fibromyagia ME and the issues .... they cant get past your down burnt out :/.. must be depressed etc .........yet where one door closes another opens i have found new friends through swimming once a week .... new hobby on the days i am good ..... and beginning to go out again with my new friends ... think your idea of voluntary work is good if that is what you like... just make sure it is flexiable :)))))))) good luck
Hi morwenna,thanks for your reply.I can honestly say that I don't actually miss doing shift work as I always hated that aspect of nursing but do miss the caring for others.I never would have dreamed that when I was looking after people with chronic pain that I would one day be in that boat myself.When I think of what I used to be able to manage at work and how iam now!for example,sitting ere in my bed clothes and haven't even cleaned my teeth yet!Not sure if I can manage the voluntary work but will give it a try and yes I will make sure it is extremely flexible xx
Hi I really know how you both feel. I gave up my job 10mths ago. Worked full-time in a Day Nursery loved it, it was hard and very busy,but it gave me something to do and also provide for my family. However year before I left that was when my health became an issue. Just could not do anything other than cry...thought it was my age, also my kids were growing up and becoming more independent and I felt lost without them.
Work was stressful, and having teens in the house was a battle.
Then in November 2011 I came crashing down, and was in bed for 5mths.......awful time, then I forgot to drive and my memory was so poor. Its been a long process, and different Dr's and hospitals, then in April of this yr was told it was Fibromyalgia, and 99% Chronic Fatigue......I dont see anyone and hardly ever go out....Hate the way my life has gone, so unfair. However talking to people on here helps. Best to keep talking on here and trying hard to get better again.
I feel similar to yourself. I'm 23 and feel like I am 60. I have had Fibro for 5 years now and I am still trying to come to terms with everything, especially the loss of friends and activities that I 'use' to be able to do - Athletics and my main hobby horse riding. However, I have gradually started spending more time at the stables and I got on my friend horse just last week, it felt so good, I can forget the pain and my back, which is my main area of pain feels a little better - I think its the way that I am positioned in the saddle. I have also started a new job, working in a respite center for children with disabilities and it is so rewarding. Volunteering is a wonderful thing, what kind of thing are you thinking about? I would recommend befriending, it is great and you can suit the hours to suit you, doing as little as an hour or two!
Hope this helps, Charlie x
Hi Charlie red!Thanks for your reply.Iam always astonished to hear anyone who can work who has fibro but I guess that it affects everyone differently.That job sounds lovely!I was actually thinking about the befriending scheme as I've seen a poster up about it a few times.Will wait to I feel a bit better then phone the number up x
I have lost friends since fibro was diagnosed, most people don't understand and I have no family around. I have found it hard but if they don't stay in touch then are they really worth getting upset over?
Until April I worked and was unable to do the school runs with my kids, one is 13 the other is 7. When I did start it took me a little while to be on speaking terms with some of the mum's but I am now. Don't be hard on yourself, smile, say hello and it will pick up from there.
I feel older than I am but try not to dwell on it and turn it into a joke, my son says I'm old and decrepit! (Jokingly) I feel guilty because I can't do things every day with the kids during the holidays but try to do something a week. Even watching a DVD can be special with some popcorn and a cuddle, the curtains closed to make it dark like the cinema.
With Fibro it is easy to overdo it and knock us back for a bit. Have a look to see what kind of voluntary work there is in your area and give it a try. I knew some who worked with, I think Age Concern, or similar, and they sat and chatted or played cards or board games with the old people.
Make sure you have time for you and your children though, you are the important ones.
Never be sorry for the length of your blog, this reply is war and peace! You aren't on your own on this site.
Hi there,thanks for your lovely reply!I have 2 careers who do the school run for me when I can't which is mostly the morning one and sometimes the after school one so it is hard for me to get to know anyone.And when I do go everyone is in their little groups so I just feel left out.Iam a very shy person and I find it hard to socialise.I do try to do special times with my kids when I can,although my oldest is at the age now where he is on his x-box or the iPad or out with friends.Sometimes I do overdo it but I try not to do that too often.Its good to know that there are people who care and have had similar experiences x
It sounds as if the boat you're in is very similar to the one I was in. I know exactly what you mean about the little groups and I don't like pushing myself in either. Start by speaking with your son's friends mum's, or inviting one of his friends round, then you can speak with one mum and not a group.
My 13 year old would be plugged into the tv or computer games all day if he could! Keep telling myself that he's ok really!!
Hi Haribo36, I miss spending time with my kids, your son sounds like mine....he is either on xbox or out with his mates. My 2 daughter's work, I see my eldest daughter most weekends she lives with her Nan and Grandad, she could not share a bedroom with her sister.....so she moved out 18mths ago I miss her loads. So now Jess has the big bedroom and makes so much mess, I just shut the door......teenagers u have got to love them. : - ) x
I love chatting to people on here, coz they all know how we feel, and how Fibro has changed us.
Big hugs to you and everyone else.
Hi They do start young dont they, my son is nearly 15, and towers over me....miss him been toddler he has grow up so fast, and my girls are 22 and 17....I ask myself "where did all the yrs ago?".
Hope u r well.
hi everyone it has actually made me cry reading all your blogs. I have had FMS for 9 years and i still haven't come to terms with it as everyday brings new challenges. I too have lost all my friends I don't go anywhere or do anything because I don't have the energy, and when I take more pain killers just to go for a walk I end up in twice as much pain for twice as long and end up on the sofa and in bed. Is it worth it???? At the moment I am really struggling at work I work in a school and it is really busy. All my energy is used up just trying to get through the work day. People just don't understand. I'm not sure how long I can keep dragging myself to work. Some mornings I'm not fit to drive and wonder how I manage to get to work safely. I have to write everything down as I just can concentrate enough to remember. When medicated I appear relatively ok. I think that's why people think I am ok. If only they were dragging this body around with them, just one day I think they would be begging for their own bodies back. Who want to listen to me banging on bout how much pain I am in or how tired I am. If only the future was Rosey!!!!!
Hi Riles. I understand what you mean about putting all your effort into keeping working, people not understanding. On top of that you have nothing left for yourself or the kids.
Have you thought about cutting back hours? Or would you be able to get retirement from your employer? After quite a while of trying I did eventually get retirement on health grounds.
Hang in there!
Hi suffolklass. Fortunately I don't have children, I just don't know how I would cope. I take my hat of to all of you who do, it must be soooo difficult and not to feel guilty. I feel guilty that my partner misses put because of me. I think of nothing else I would love to retire, unfortunately in education you have to be nearly dead to retire through ill health. At the moment I just can't afford to work part time. I'm not really sure my boss would let me reduce my hours. I do have good days but you know what it's like your head tells you one thing your body a very different thing!!!!! I feel I'm a bit stubborn I don't want to give into it. In 2004- 2005 I was off work I went through a really bad time and I don't want to go back to that. I'll just have to plod on until I can't anymore. X
I think that's part of the process with Fibro, not wanting to give into it! Keep going for as long as you can. Xx
Hi suffolklass, that's what I keep telling myself, I think I' m a bit low at the moment I've just gone back to work after having 6 weeks off, ( I work in a school) I had quite a bad time spent more days on sofa this time it's becoming more apparent that I'm able to do less than last summer hols. It's always hard going back after a spell off, I just don't know how long I can carry on. maybe this mood will pass and I'll feel I can cope better. Fingers crossed. X
Hi Riles-17, I admire you for still working, wish I could. I have good and bad days, days when I am in my PJ's all day. Somedays I can sleep for hours, I know how you feel. Try and take time to rest and maybe go part time at work. Take care.
Hi janlou, I think I'm too highly strung to rest my mind works overtime willing my body to get up and do things. On the good days I just want to get on with it then realise the next day that I've done too much and spent the next god knows how long paying for it. By the time Saturday comes I like you are on the sofa in pjs (I live in them). X
Hope you feel better soon, and try and rest. x
i'm sorry you feel low and a bit on the sidelines. (I have only had fms for just shy of two years and am still nursing full-time thankfully) I can identify with your desire to do some voluntary work. I think being a nurse is not just what you do but who you are, and if you are feeling up to doing a few hours a week, just go for it. There are so many charities that are crying out for volunteers. many hospitals do a 'befriending scheme', helping patients with meals etc if that is something you would be willing to do.) I used to help out at the local animal shelter as I am a total animal lover. Too heart rending for me as wanted to bring all the animals home!!! should have volunteered in an Oxfam shop instead!! ha, ha. keep us posted as to what you decide to do and how it goes. love, lorraine
Hi I fell the same it's like you taken the words wright out off my head, I am only 34 and my mum is in her 60s and she can do more than me , it makes fell like crap as I have always done everything myself its going to be hard for me when move into new flat I won't be able to decorate
Hi girls I have been through all you are going through I had to stop working because of fibro .I started at. 12 years old with fibro I am now 61 so a very long time and this I will say ,if you can accept that life is going to,be different and with its limitations it will go easier with you .Im not saying Dont grieve that's important that you do .Look at all you can do and what you have beautiful children ,having said that I know its hard no one knows better than I how hard it is so sending you gentle
hugs and a sincere wish for the pain to stop .xx
Hi, funnily enough I have just in the last 10 minutes sent off an enquiry to volunteer at an MS therapy centre. I too was a nurse but feel fibro with the depression, anxiety and physical limitations it imposes has changed me. These days I get far too easily upset and thin skinned which is no good when working as part of a team on a busy ward. So I've had to accept its over, it was good whilst it lasted but enough is enough. I need a new direction so maybe this will open something up to me? I just did a search via the volunteer centre in my city and in the search engine just put nursing but as I didn't know what I wanted to do just left the other windows at ANY. It came up with this oxygen therapy operator role so who knows? I work 3 mornings a week as a carer but feel so unfulfilled in this specific role so need something else to do but can't commit to actually working more set hours. Volunteering isn't as much of a tie though.
By the way don't think life is over Fibro has a habit of presenting itself in different guises over the years. I used to have a lot of pain but now pain isn't so bad but I struggle with depression, anxiety and digestive problems. Diet food supplements and herbs helped me and drugs too at one point but now I am going down the herbalist route. Try eliminating wheat and cows milk from your diet for a while and not using processed foods, these things have helped me a lot.
Hi and good morning , I too had to give work up last aug , I was diagnosed late sept . I was a nursery nurse with 26 pre schoolers , I miss it . I was so fit and always on the go , I went from full time to part time and even took on other studies to go further , I too spent the first months in bed in this pain and fatigue I just didnt understand , since then ive tried many meds , physiotherapy , hydro pool, ect , none worked iam now under a pain consultant he gas been understanding , and listens. He put me on lycria it did help with my anxiety disorder and sleep , but there no longer helping and not with the pain. I too feel so isolated I cant even think straight , im confused most days and really only go out to attend appoitments , its everything else we also have to deal with other than fm ect ,finding the energy to deal with family problems or what life throws at us , I can be ddebilitating on top of everything , big hugs and love to everyone xxxxxx
Sorry to hear your feeling so down. I guess there is some comfort in knowing you are most definitely not alone. I also lost touch with friends. I am very depressed. I have tried so many different drugs that have either done nothing or given horrible side effects. My poor Doctor is very good and she tries her best to help. I think she feels like giving up! Currently seeing a shrink at the pain clinic and she told there was not a lot she could do (that was at our first session)! Doc told me the pain clinic train you to ignore the pain! Flippin eck! Soon we will be doing all surgery without anesthetics then!
Hi all of you...... I understand where you are all coming from....been there done that.....I have had Fibro and a under active thyroid for a total now of 13 years...been to the lowest low and the highest high's...with both conditions. I would strongly recommend that if you have not already done it ,ask for a thyroid blood test as it seems one can go hand in hand with the other...The second thing I would recommend is for all of you especially if you have been perscribed anti-depressants to check the side effects of your medication.....for years I was on anti depressants and zomorph....until I read the side effects...took my self off them straight away and within weeks found a improvement in some of the muscle and joint pain and had a clear mind again.....while on Zomorh I was like a zombi.....parts of my life while on it I can't even remember. When I was put under the pain management team I was told the opiete drugs don't even help with Fybro....makes you wonder why my GP put me on it. Perhaps zombie's are easier to handle or could it be they actually get more funding for mental health issue's....it took me 5 years to accept that my life was going to be different ,that was the hardest point for me. I try to stick to unrefiend foods..no prepacked meals lots of fresh veg ...sadly fruit upsets my IBS...but I eat it in moderation. AND KEEP OFF WHITE BREAD..I found I feel much better when I don't eat it....the other piece of advice I would give every one...DON'T BE FOBBED OF BY YOUR GP'S....investigate things for yourself ...the NET is full of useful information at your finger tips and don't be afraid to ask questions...if you don't ask the right questons you'll never get the right answers ...... If you are on ESA be carefull with the voluntery work they will use it as eveidence that you are 'fit to work'....as sad as that sounds. Best of luck to you all ...and remember you never know what tomorrow brings.....with a bit of luck...it may be a pain free day....best of luck
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