Feels like my body is screaming at me to stop and lie down in a dark room, in a comfy bed and never move from there.

[Bumblebee]

I know that pain is a sign from your body to slow down n rest up. But I feel like my is constantly screaming at me. I range from feel groggy from being doped up to really in a lot of pain because I have slept late and missed a dose of tablets. the choice is do I have a life, one that goes beyond my bedroom or even house or do i give in to the protests of my weary body. surely giving in would generate further problems in the long term, but some days there really is no choice. the psychological impact alone on me when i have prolonged times of not getting out is a major issue. its important to have a degree of control even if i end up suffering greater pain by pushing myself to the limit. I think I could have more help with mobility aids, i use a walking stick because my balance is bad and I am weaker one side more than the other. that being said it doesn't feel enough and have been known to overbalance even with my stick. some days needing my stick drives me mad and i feel like its more of a hindrance and this gets me down as its then when i realise i need more help not less. i think the greatest battle is within each and every one of us, then its down to us to convey whats going on to gp. i think too many of us plant everything at the doctors office, yet fail to articulate properly what our needs are - there are no winners in this type of situation doc can't help properly and patient feels unrecognised. its a vicious circle one in which its us that suffer further. i think we have to find a coping strategy that works for us but we also need to constantly re-evaluate it to make sure that strategy still works - unfortunately its like a lot of conditions that have many and varied symptoms, we are constantly learning about them and how they affect us - which can be very different to anothers experience. thats why its important for us to be self diagnostic to a degree in order to communicate more effectively to gp's in order to get the right help. yes my body is screaming at me and has been for a while, I need to keep going back to the gp until each of my symptoms is back within the bounds of managemement, where we reach a status quo that I can live with for a while

[sophie22]

Could not have said it better myself. My life seems to be a constant battle every day with pain travelling round the body, but in 10+ years I have never stayed in bed, it may take hours to get up, bath and dress but I do it. I see the confusion on my GPs face when I go into him and try to keep it one out of control symptom at a time, Bless him I know he wants to help but his hand are tied by what is available and that it not much where I live. I just do one day at a time, if yesterday was a bad day does not mean today is, although at the moment I'm having the worst flare ever! I think that people who are in chronic pain or disease of any kind are on a spiritual journey as well as a physical. I for one have learn't so much about myself and what really matters in life. we need to be loving, caring, accepting and let go of the things we cannot change. I can't work any more, I loved my job, but now I do things I would normally class as a hobby to keep my brain active, it takes a lot longer to do thing when in pain especially if the pain is in the hands but this teaches us patience. My body is screaming at me today so I am just pottering and trying not to make it worst. sorry for rambling, I don't get to talk to people very much, feel a bit isolated during the week, the family are all at work, its great that they all have jobs. Hope you have a comfortable day, gentle hugs and healing thoughts.

[Fibrofoggiest]

I agree with Sophie, you have completely summarised exactly how I feel. I struggle and get up and do "normal" things in an attempt to convince myself that I can cope. The last few days have been ones that I certainly can't cope with, a flare which is wanting to take me over completely, but still I try to battle on. The urge to retire to bed and keep all stimuli at bay is very strong, but I must fight and try to do at least one or two little things before I drop yet again with complete and utter exhaustion.

Foggy x

[TheAuthor]

Hi Bumblebee. I am so sorry to read what you are going through and having to tolerate, as I can relate to much of what you have said and I am sure most users of the site can also. It's is very difficult knowing where to start with Fibro let alone getting others to understand but you have written it admirably.

Take care

Ken x

[agtf1]

I found for me that pacing myself, including allowing myself to curl up in a darkened room (for a set amount of time) helps. And choosing each day what to use that precious energy on. Of course some things have to be done (school run, eat, etc) but others like housework get put off. I work from home and by splitting and reducing my hours to allow time to rest and sleep if necessary, I've luckily been able to keep working.

Of course there are some days I have to give in and stay in bed, but by allowing myself to rest one day, usually means I can get up the next.

My walking is also bad with a lot of pain & dizziness & even with stick can't walk for long. I've found that by using a mobility scooter, as well as enabling me to keep my independence (cant drive anymore) it also helps me to conserve some energy to do other things. I also try to keep back enough energy to do at least one thing a week I love, whether its painting, riding side saddle (only exercise I can do that doesn't cause a flare) or another hobby. I think doing something u love, even if only for a short while, Can make a huge difference emotionally and therefore helps physically.

I know we are all different and need to find what works for each of us individually. I hope u find the right balance for you. Xxx

[Bumblebee]

Hi all, thanks for your responses.

I find that doing something you love does help with the positive aspects. I help to run my church - for my part I have such an integral role, that I have to attend at least once a week (I am the head of my church). However that commitment means that sometimes I have to paint a smile on my face and do more, with so many aspects from running services, to helping someone with a crisis or just a listening ear. At the minute, I am struggling with this however, I wouldn't have it any other way, especially as the impact of being able to help at least one person gives me a sense of usefulness.

Today it seems the pain is much more manageable, although my hands are playing up. I won't be going out anywhere, till this evening, so will be taking things really easy until then as I will be working. My work revolves around and is linked to what I do at church - again helping others. I manage my diary so as not to overstretch myself, I'm usually good at avoiding big flare ups and usually just have to put up with a few days or a week or two at a time. Of course I can have bad days like us all, but like I said in my original post its a constant re-evaluation and at present i am considering whats more important to me - my work or my church. That's a tough one! I have been in flare up since before christmas. It started with exhaustion, caused by pushing myself doing too much for too long. Then from boxing day the pain really kicked in and have struggled until finally going back to the doc last week. The joint symptoms have kicked off this week and the hands and wrists are new one for me, think i need an anti-inflammatory now, just don't seem to want to go back to the doc just yet. its like i could be there every week at the minute, lots of new symptoms in the last 6 months. In the past I have been lucky with flare ups usually being between sleep disorder/exhaustion/pain. This one has everything going on and is persistent in its been going on forever! Still slept well last night though, then again amitryptline has been doubled up again!

gentle hugs my friends, Jean xx

[Bumblebee]

hi nancy, i have started to say no to some lately, i just can't spare the energy for somethings that really are quite unnecessary, just to put someone elses mind at rest. they don't like it but we don't have to meet up just because they want me to look over something for them. I am overseeing a few people at present and some are great and i don't mind the odd email asking questions n stuff when i'm not around. but i won't allow someone to demand my time at the moment that has to be prioritised and is being. don't know how i found the word 'no' in my vocabulary but i probably have because i've had too. i've come to the point now realising that really no one else could do the job better even if they think they can. i do my best and do a lot more than i'm given credit for, they haven't a clue as to what i do behind the scenes.

i'm doing a bit better at the minute, but still a long way to go. certainly can't do a lot but a bit is better than none. staying positive and won't let others drag me down.