sarah: hello to anyone who reads this... - Fibromyalgia Acti...

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sarah

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hello to anyone who reads this. I have never wrote on here before though i have read posts for a few months and have only now had the courage to write and maybe get other peoples veiws or advice. I am 40yrs old with 4 children who still live at home, up until nearly 4yrs ago i ran my own pub. I unfortuntly lost this in the recession due to this i was diagnosed with depression as the time my heath started to go downhill rapidly what i could do one month i couldnt do 5 months later and so on. finally this january i was diagnose with fibro.Which came with missed feeling of glad to know what the hell was wrong with me and scared to know i had this illness. I would like to thank everyone who write on here because i have learned alot and comforted to know that other people have this and little tips on various subjects but i am finding it so hard to go from that business owner who worked 14-18 hrs a day and mother to someone who cant open a fresh bottle of milk in the mornings. To someone who balanced books for a living to someone who cant count the right change out in a shop. When i was first diagnose it was ok so ive got this a few pills and carry on over time i have learnt different. over time its took its toll. 3 months ago i took the bull by the horns and contacted a well being clinic for mental health help. I have this complession to clean and have to have all jobs done i have listed regardless if im exhasted or in pain its like my mind wants to be constantly on the go but my body cant handle it and the two fight it out, i started counselling to see if i could work my head out which helps a bit to offload and i saw a phych who diagnosed me as having sever anxiety. it like god havent i got enough to deal with lol. my marriage has suffered even though i have to say my husband is brillant he tries to understand wot i am going though and i put him though hell with worry. sometimes i feel so alone in all this i cant stand it when i cant think cant do what i want without consequences. can someone please tell me have they been though this and how and what do you do. my sex drive dissapeared over a year ago (tips please on how to get it back and am i the only one) i am sorry to write my life story and bore you all but please help

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19 Replies

Hi Sarah.

Oh, you really sound like you're going through it. You probably know by now that many people on here have had very busy lives before becoming ill, and we find it hard to adjust.

It sounds like you're still grieving the 'old you' who was energetic, dynamic, capable etc etc. unfortunately, you need to learn how to pace yourself. You need to adjust to new levels of energy. It's really difficult. But all the time you keep pushing yourself to the limit and beyond, then you're not giving yourself a chance. On top of that, your whole family is going to have to learn to adjust. And it won't be easy for them either, they will all have to do more, at the same time they will be having a whole raft of feelings about your illness that they might struggle with. If you can help them to talk about their feelings, and to understand more about the illness, then they will be better able to support you too.

I hope you soon start to feel better, and that you and your family can work together on it.

It's not easy, but you sound like a string woman, so I'm sure you'll get there.

Kaz

xx

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thank you for taking the time to reply.

vajrayogin1 profile image
vajrayogin1

Hi Sarah. Yes I,ve been there too. Severe anxiety etc when first diagnosed, not only the pain which was like drilling in my shoulders sawing my ankles off and a hammering to my knees all at the same time, I couldn't lift a cup, clean my teeth, wash my hair etc. Like you I pushed myself more and more, in denial big time. It is a death of your life and the grieving goes through the same stages from denial, anger, barganing, to acceptance, only then I learned to pace. I was a teaching assistant but had no choice but to leave, also lived in shared accommodation in Manchester, no dss allowed! So came back to cumbria, no possessions only my car and a few clothes, on homeless list for 3 months while a friend put me up. I now have a lovely flat of my own but the stress and anxiety boredom were intolerable. I really do hope you feel better soon, how old are your children? can they help around the house washing up making meals doing the laundry? I now have a lovely partner who does this for me which is a godsend. My children are 28 & 26 and live in Manchester they also come to visit as often as they can. Lots of gentle cuddles with hubby, gentle massage etc and most importantly sensitive communication brings closeness and well who knows what else!

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corner in reply to vajrayogin1

thank you my children are 2yrs 5yrs 9yrs and 15yrs. sounds like you had it really hard puts my story to shame

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vajrayogin1 in reply to corner

your story is just as difficult as mine Sarah, I couldn't cope with looking after children and all that entails, believe me I have it much easier. Hope you feel better soon, I go to a night class once a week, homework for that keeps me busy and less anxious now.

maggie61 profile image
maggie61

Sorry you are having such a tough time, I struggle as you and others to accept I can't do as much as I used to do, I find it hard to pace as suggested but do think that is good advice. Best wishes to you

Maggie

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thank you

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thank you

Sarah, please know that we are all here for you and we all understand how you feel and your symptoms too. Many of us suffer from the same so we are all in the same boat.

We will try our best to help and support you in any way we can through this journey with Fibromyalgia, we can all compare notes, draw from each other's experiences which sometimes is a great benefit. We realise we aren't alone here.

Have you considered having a chat with the Samaritans, they are always there to discuss any issues that trouble us. Contrary to popular belief they are not just there for extreme crisis times, they are happy to discuss anything. Sometimes it can really help chatting to someone impartial who will listen without judgement. It might be worth thinking about as we all tend to bottle up how we are feeling when we aren't well. It might help your anxiety too.

Have a word with your GP too, explain how you are feeling. You might need a meds review which we all need from time to time as our symptoms can change.

If there is anything we can do, please just ask. Always happy to help. Please take care.

(((hug))) xxx

Libs

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corner in reply to

thank you so much its good to know maybe i will try my gp

tulips123 profile image
tulips123

that's 1 heck of a steep learning curve. wouldn't surprise me if you're also still in a state of shock. my health is very poor with a number of health problems but has been more gradual deterioration than yours. I still fight to retain as much independance as possible, but I can see what you are going through must be very difficult to deal with.

i found this site back in May and it is hugely supportive in the darkest moments, as well as informative, and believe it or not even funny @ times! Wish you all the best. xx :)

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corner in reply to tulips123

i know what you mean about this site i have took so much from it

Dixiesdaughter profile image
Dixiesdaughter

Hi sarah sorry to hear your struggling at the minute, both with your condition and comming to terms with the restrictive lifestyle it enforces upon us. Like others who have commented I too think you are going through the greiving process, which unfortunetly is well known to those of us stricken with this cruel condition. Most of us had an active work and social life before fibro struck and we too face a battle of wills which involved denial of our condition,stubborn determination to continue life regardless of the resulting pain exhaustion and ill effects untill finally we hit a wall and our bodys give up. In order to prevent this happening you have to first grieve for your old life, accept your current situation, explore ways of 'pacing' yourself so that you can manage your condition; continue working socialising and living without putting undue stress on your mind/bodyexacerbating your condition and hastening a decline inyour health.

Pacing techniques may include medication, attendance at a pain management clinic, aqua therapy, gentle exercise, complimentary therapies, relaxation techniques, eating a balanced diet, getting adequate rest, joining a support group, delegating tasks to family and friends etc

The battle to accept that we are now suffering from a chronic health condition and therefore are now 'restricted' in what we can do, where we can go,what we can eat etc is probably the hardest part of living with fibro but for your healths sake you must reach a point of acceptance and then adapt your life making adjustments as necessary.

I wish you well and hope that you will find the strenght to reach acceptance soon and remember accepting your limitations is not about giving up but about finding new ways to cope with the challanges we have been given. Let go of things you can no longer do and find new gentler stimulating hobbies and activities to replace them be brave and a whole new world could be opened up to you

Take care

Dixie xx

nannyjenno profile image
nannyjenno

before discovering this site I had never written anything in a forum, but after a couple of days I felt able to write something, surprising myself with the confidence I felt after such a short period of time. It was reassuring to find out just how friendly the people on here were, and theres always someone who will answer questions,give you advice and who can relate to what you are going through..Ilook forward now to reading members blogs and catching up on whats been happening..Im sure you will get lots of replies welcoming you and offering advice..gotta go now......xx

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i would like to thank everyone who relplied i only expected maybe one or two comments. I was touched to tears of the warmth and time you all took and the advice you have all given me. thank you all so much

in reply to corner

Oh bless you Sarah! It's a pleasure having you here with us! :)

We are all here for you, Nanny too and for everyone! We will help you and support you wherever we can, we are here for you all. We understand, we have Fibro too.

(((hug))) xxx

Libs

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corner in reply to

thank you

ArctoLindy profile image
ArctoLindy

My sister belongs to another forum where they say to new members "Welcome to the club that nobody wants to join" I think its equally true of fibro too. I've probably had fibro for most of my life though it only became severe in my 20's. I used to belong to a running club and I loved to walk miles but now struggle to manage short distances with crutches, its hard to say goodbye to the way life used to be and even now I still hate to accept the restrictions it puts on my life, I'm my own worst enemy as I'm always trying to push myself harder and then suffering for it.

It sounds as though you have a lot to deal with at the moment, my sister and one of my friends both have 4 children so I know that your hands are pretty full! Do you have girls or boys? My sister has two of each while my friend has 4 boys. My son and my sister's eldest daughter were born only a few days apart but I stopped at one. I hope you have a good GP as there are things that can help. Don't be too hard on yourself and try making shorter "to do" lists! Take care xxx

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Thank you for your reply i have 3 girls and the little one is a boy. Im afraid my gp are not that good at talking too. When i saw them a couple of months back to discuss how i mentally was feeling he told me he didnt have time now book a double appointment next week which i did. The next week i went after reminding him why i was there he handed me a leaflet and told me to ring them they could help me he wouldnt even listen to me. I get so worried about going to the gp as i can imagine them thinking "not her again what now". I only go now when i really have to.

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