Really struggling

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Really struggling

Postby leikela » Mon Sep 30, 2013 7:26 pm

Sorry to just barge in but I really need to vent!

I am having such a hard time lately, I don't know how to cope and trying to get hold of my consultant (or ANYONE at the hospital) is impossible!! I'm having horrendous pain which literally takes my breath away, senses are going crazy and I can barely remember my own name most days. I'm finding even simple housework is a real mission, which is so frustrating as my house now looks like a bomb hit it. My son is having to miss out on activities because the thought of getting in the car to go anywhere makes me feel sick. I can only just manage driving to/from school most days! And then to top it off, friends keep saying "well you haven't been bad lately have you? I mean, you look really well!". I'm sure they're trying to be nice but it makes me want to cry because it's SO far from the truth. I've just learned to try and look human because it's easier for them rather than ask about me.

I want to scream but that requires far too much energy!!

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Re: Really struggling

Postby FluppyPuffy » Mon Sep 30, 2013 8:05 pm

Sorry to hear things aren't getting a little easier for you yet :grouphug: :grouphug: It does take time to find what is the right way for you thru this, but it is possible to start moving towards it.

Can you see your GP about something that could help with your pain levels at the moment?? Even if it's something to just tide you over until you can get to see your consultant, it would help make things a little easier for you.

When it comes to the domestic goddessing, you need to work within your capabilities. Tackling things all at once isn't an option, unfortunately :( :( :( Instead you need to look at breaking things down into smaller, more manageable sized bits interspersed with regular rests to help you with getting thru the day. Again it will take time, but you have a good chance of getting things looking a little less bomb~strewn and more home~like.

The activities that your son is missing out on, are there organised ones, or things that you and he tend to do together?? If they are organised ones, could you talk to the people who run them, explain about how you are affected etc and see if there are other ways that you could get him to them. If they are things that you do together, maybe see if there are other things you could do that are easier to access.

I know it is hard to start taking those first steps to do these things, as I've been there myself many, many times, and even now struggle with having to do it, but once you do manage that first one, it means each one you take after it becomes that little bit easier.
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Re: Really struggling

Postby fibro-lu » Tue Oct 01, 2013 3:40 pm

hi and welcome

do 100% agree with Flupp

maybe another parent (living near by) could bring and pick up your son? people are quite helpful
maybe in "return" (so you don't feel quilty) you could offer a sleep over per term for that boy (would help if the boys are friends) which would give these parents/ this single parent a night off to go smoozing/dancing or whatever

I live in a tip too, think most of us do
thinking that it could be much cleaner/tidier/better will only let you see the "short comings" and ads to frustration
thinking that it could be much dirtier/messier/worse will let you see what you manage to do, not to forget the love/support/time etc you give,
I know that's hard, I i.e. keep up quite good with the washing of clothes (dishes, hoovering not so much) and I try to focus on that (washing/ hanging up/ folding/ putting away - these are already 4 things I am good at)

hope that helps a bit
all the best :cow-wave: Lu
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Re: Really struggling

Postby Bridgitte » Tue Oct 01, 2013 5:41 pm

Hi Leikela,
Sorry you're not so good, its hell living with fibromyalgia at the best of times, and it doesn't help when other people, who don't understand your illness-or don't want to understand-make stupid comments about how well you apparently look, which is why Fibromyalgia is usually referred to as an invisible illness.

I have it too, and have to stick to the rule of do a bit, rest a bit. If it was the others who had it, it would be a different matter completely, but its you that's got it so listen to your own body. So often you have to push yourself to do the simplest thing, to take the rubbish out, to take a shower (with or without help) to get yourself to go out even for just an hour. I don't go out as often as I used to, which is infuriating, but I try pushing myself to go out on a Tuesday morning to meet with my youngest daughter (now 25) in town; the bus stop is just a few metres from my home, so not far to walk, then she meets me at the bus station and walks at my pace, even tells me off if I don't sit down whenever possible, and the bus station is in centre of town so not far to get back, and by the time I get back home, I'm ready to fall flat on my face.

I hope your husband is understanding and helpful of your problems, as he see's it first-hand, knows your flare-ups and moods that go with them. Do either of you have family that can help to take your son to places that you feel not able to do? Try not to feel guilty about not being up to doing these things for him, I know you try your best; I had 3 kids and my health problems caught up with me and wasn't able to keep up so well, did things when I could, but they also had each other and went places together and my mum sometimes took them places.

I sometimes get messed about by consultants at the hospital, especially appointments, but I have a brilliant GP and there have been occasions when my hospital appointments have been cancelled and put back another 6 months (after already waiting 12 months since last ) and GP has contacted them himself and brought the appointment forward again. He's done that twice this year for me, the second was when I was referred for Endocrology (hormone specialist, I now have problem with Adrenal glands, already have an under-active thyroid) and not give an appointment due to waiting list-he contacted them and now I have an appointment for next month. Please give your GP a try with the hospital, try and get those answers for you.

My Nan, before she passed away a few years ago, told me what my granddad used to tell her: why stand when you can sit, why sit when you lie down. So true. Don't spend your time worrying about what others think of you and your illness, you listen to your own body and rest when you need to, knowing that you will probably do a little bit more when the flare-up is not so excruciating.

Sending you careful hugs.
Last edited by FluppyPuffy on Tue Oct 01, 2013 6:20 pm, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
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