Just feeling so down and alone!!!

Well what a horrible weekend....First I saw my Dr on friday who once again promised to refer me for physio ! only 5 weeks after he told me he had done it. He then said altho the steroid infection has now worn off ,I cant have anymore due to adverse side affects. ( when I had it I said does it have bad side affects and the guy said no )

After travelling to the Dr I was in lots of pain as I cannot walk let alone get in and out of a car. So I went to bed for the rest of the day!! and got up for my Tea but was not good.

Sat I woke to find I could not walk well at all. I honestly thought it could not get any worse.....but it did,my legs would not move and then I got really cold...so off back to bed till early evening.

My husband has PTSD and I have looked after him for 20 odd years ,and now he is having to look after me and he is not really well enough so said Dr has now organized the OT people to come in and sudgested we pay a carer to look after me or my husband will be ill again.....I feel so low like I am a burden to him!!....To add to this his son doesn't call and my daughter doesn't even try to understand and never called all weekend,when she eventually called she said "Oh whats up with you now ? you sound so misserable ,you need to think more possitive Mum. At least the Dr is doing something now and you will be having Physio in the next week or so !! " then went on to tell me in great detail how there are a lot of people worse off than I am and a lot younger !! I do know that but this is happening now to me ,if only she would try to understand.

Sunday was worse and today is not good but not being able to talk to anyone about all this

I decided to get on my computer and write it all down.....and now having read it I thought "Oh just delete it you are just moaning to people who have the same as you.".......I am sorry if this is a bit " Woe is me " but I just feel so alone in this illness as most of my so called friends have long gone..Proberbly not real friends at all.

Thanks to anyone who has read this and sorry it has gone on but I just needed to waffle and rant.

Looking forward to happier times x

Gentle Hugs to all

Rainbowdancer x

13 Replies

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  • Hi Rainbow,

    It is more than OK to let your river flow, on here everyone suffers in some way or other and needs a shoulder or 'computer' to lean on lol because this our communincation when we do not want to keep burdening our families, the thing with the likes of Daughters and sons as daft as it sounds they will still treat you as if nothing is wrong! They will treat you differently if you are laid up in bed and can see that you are not well enough..

    I have had a go at mine some times with the house work and cooking etc in the beginning it took a very long time to sink in as i used to say ' do i have to be sick in bed and throwing up for you all to notice what sick is' ?! i cried and said how fed up i was and printed out the information and said to them ..alll i want you to do is sit for 5 mins without your phones and friends and TV's and absorb what all this says, because you see me get up and get into my car and drive to work etc this does not mean i feel great!!!

    They now help themselves and do a bit round the house, they cook and do not once say to me 'mum what you making for tea' they see me sat on sofa and being quiet they know now.

    The peeling of veg and potatoes, opening tins and carrying those pans were once tears because i got frustrated and now its just life now.

    You have a lot going on and your hubby as well with his condition, so i do not think he really minds helping you at all and you have your life together and if things were not happy neither of you would be where you are.

    You are NOT a burden and also why should you have to pay for care?? are your earnings too high? will the Care Services not beable to help?

    Your Daughter i guess in a fashion is trying to make you feel better but to you that is not what you want as to you it will not make you better.

    I too have had wkends been stuck with my legs not working and i shove everything to the back of my head and pretend ohhh its ok as it will pass then something else will happen and try never to show my tears to the kids either.

    MIne are various ages 20's Teens and 12yr old 2 have left home and 2 still home.

    When it comes to Dr's we have to pressure them and keep them informed as other wise they donot know what is going on with us. i just feel a nuisance at times going but same time i dont bit mixed feelings about it. Without us they have no jobs so keep going !!! :-)

    There is more people around than you realise, maybe we all say weird things and sometimes a muddled up answer which makes no sense (thats me lol) i tend to flow off and say something else .

    are you on Medications and besides FM do you suffer anything else like me i have BHMS/EDS which is the ligaments and muscles and collagen, so this makes me weak so i fully understand when legs do not want to work i sometimes think omg is this it and like your daughter says 'think positive' i try and focus and i browse internet all the time it passes time on. I do have a job though so never stop. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx snuggly hugglys

  • Try and think positive and focus on good things, its hard I know, but there are lots of us here who care. It helps to rant every now and then to complete strangers and hear their stories. Sending you gentle hugs and wishing a comfortable next few days for you and hubby xx

  • My heart goes out to you... You are not a burden, nor are you alone (there's lots of good support on here) and I hope that you can get the help that you so desperately need very soon. If your GP isn't supportive then it's time to change!! You need all the support and encouragement you can get.

    I hope things improve really soon for you.

    Gentle hugs

  • Just thought u'd like to know ur not alone. My children and siblings all trllr to give myself a shake. Like that's all I need to do! If u look well how can u explain how ur feeling. I get so frustrated with them all and want to scream, just go look it up and then u will know. Still waiting on anyone of them taking the time to do that. This illness comes with many many other conditions. I personally think somedays, what the Hell else will be put down to fms. I don't doubt that it is its just telling anyone the list of complaints would make anyone think. Really.....so I feel the way u do every single day. Anyone that says to think positive drives me crazy because some days I can't think straight never mind positive. I truly hope that ur family do look into it more. Take care and remember ur not alone. Hugs. Sheena.x

  • Hi - It is so easy to feel like you are alone when you hopes for support don't materialise. The stress of it all is probably no help at all to your symptoms and you sound like it is a spiral downwards. It is so hard when people that you love don't understand or even empathise, when you really need them too. But you are not alone - and the forum is a great place to offload - it is one of my main coping mechanisms. People really underestimate the emotional anguish and turmoil that goes with the whole package of fms and life itself. BUT that is mostly people who can't possibly know what is like to have the burden of fms and are holding up the world on painful muscles and joints as well as 'staying positive' and dealing with each new blow as it arises. People on her do understand. give yourself permission to feel like you do and don't let it take over, because you will and can pick yourself back up and carry on again. Getting some extra help is a must - and can be provided by social services if you meet the criteria, but you need a social worker involved. Sending hugs and 'little bags of magic' that hold the special dust to make things okay xx

  • You are not alone, we are listening, i hope things pickup for you and your hubby. love and thoughts xxx

  • Thank you all so much I am so grateful for all of your support.

    Unfortunatly I had a really bad fall tonight . :-) I was just going to get on my stair lift at 9:30 when my husband was helping me and like I have done before I fell backwards and he could not grab me. I fell into a cupboard and the unit in my dining room, It took Mac and I over an hour to get me up!! I have hurt my arm,leg and hip and now pulled all my muscles. I am not strong enough to get up as cannot kneel on my knees. Mac ended up hurting his leg and back as I am not a light weight anymore,I have put on stones since not being active. Now I cant sleep because I can't stop shaking inside and I still have to get up stairs and get on my bed. Was hard enough yesterday !!

    Well guys thanks again for your support x Hugs to you all gentle but well intended x x

    Rainbowdancer x x

  • foggy brain I put :-) instead of :-( So cheerrier than I thought lol x x

  • Sending you a million gentle and healing hugs ((((((((((((((rainbowdancer))))))))))))))))))

    Don't ever think you are "moaning" when you most definitely need to have a great big rant. I know just how you feel and, bless them, I often get the same from my children (especially my daughter). I think in their way they truly believe they are helping you by telling you to pull yourself together and be positive. They also hate the idea of their mum not being well which obviously doesn't help you much cos you aren't over the moon at not being well either lol.

    You sound like you have had the weekend from hell and then to top it all you go and fall over. I just hope that all the support you have got on here and hopefully from other Fibro support systems you may have in place has helped a bit.

    Love the "cheerier than I thought" comment too.

    Take good care

    E xxxxx :) xxxxx

  • Thanks E ,yes I am so grateful for being able to come on here. My daughter set me up for facebook,but I either don't get anyone comment or on days I feel bad I get ...so in so likes your coment. How can someone like a comment when you say I am having a day from Hell lol x x

    It took us over an hr to get me up and I am in agony today not one part of me that doesn't hurt,but sadly my husband who suffers with spondilitus and both Athritus types has hurt his back ad knee and is not able to walk today. ( What a pair eh !! )

    Thanks for the Healing (((((((((((((HUGS))))))))))))) I needed them x x

    Gentle hugs back to you

    Take care , Love and Light

    RD x x x :-)

  • Take it easy both of you (not that you can do much else I guess) and I do hope you feel better by tomorrow......well as better as you can be.

    Many more healing hugs coming back at you.

    E xxx :) xxx

  • For ranting and raving about fibro you could noot be in a better place than on this site. I sometimes forget how it feels for others being a chronic sufferer myself for 20+ years now. And I often feel down and sorry for myself. It par for the course I'm afraid. People cannot possible comprehend what we as sufferers go through unless they go through it themselves. I have always said this and in many ways it applies to those in the medical profession too. They can only summise what a fibromite is going through. So it is hard to get your point across even to your daughter. My daughter favourite phrase is 'life goes on'. Sometimes her saying it makes me angry and other times I realise she is right. She has had her fair share in recent years including stopping breathing four times to date. So for me if she can tell herself life goes on after being brought back to life four times then I am sure I can fit that phrase into to my life somewhere. But having fibro can be such a lonely time and I try to turn that to my advantage, but it is not alwasy that easy. I send you lots of gentle hugs xxxxx

  • Thanx Ozzy, I have had cvfs for about 20 years or maybe more and it laid on the back burner for a while when I followed a book written by a Dr who had had it. But due to exess stress the last 10+ years I had flare ups of my fibro till now . My mother nearly died last year she was given 3/5 days to live and I sat with her for over 3 weeks and then another month of all day and eve visits,then she woke up and asked for a cup of tea, She could not feed her self or do anything.............however she is now in a home and better than me at the moment. Dr said the stress has given me acute fibro now. My fall this week did not help ,I am stiffer and very bruised.

    Now at the end of a hard week still no word from hospital even tho Dr promised to write URGENT on my new referal.

    Oh dear ranting again Ozzy I am not always like this just it is so frustrating. Sorry babe x

    Thanks again

    Rainbow x x

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