hard to keep going sometimes...

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hard to keep going sometimes...

Postby Crafty_Lady » Sun Jun 08, 2014 10:49 pm

Having a bad day today with FM, been absolutely knackered all day, it was so hard to even open my eyes and get out of bed this morning. Feeling a bit down at the mo, had my mother in law on the phone moaning to me - whatever i have - shes had it worse....telling me how "they'll take those pills away from you" - i said they won't, no doctor has even mentioned me not having my med's - its ridiculeous. She just doesn't have a clue what is actually going on. Sorry for the moan on here, just kinda feeling like what is the point sometimes.... people don't realise how hard it is every day, just because you can't see something wrong with me to look at me, doesn't mean i'm fine.... cos i'm not.
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Re: hard to keep going sometimes...

Postby djclall » Sun Jun 08, 2014 11:13 pm

Hi,

I have a mother in law who just doesn't understand how this illness works and how debilitating it is. Recently i was told that my mother in law hated me. So i asked my sister in law. And it's because i have fibro!!!!!. Seriously. She thinks i can do a lot more than what i actually do. I have 3 kids ages 19 11 and 7. My oldest one has moved out and she thinks that my younger 2 are not having a childhood and i put on them too much. My girls, 11 and 7, love helping out. They cook and clean and help me in the bath or getting dressed. Even reminding me to take my meds. Although i have a carer coming in twice a day and lots of family and friends local including o neighbour that is on hand 24/7, my girls still want to help me. It doesn't matter how much i say no, they still do and sometimes without me even asking or expecting. I have found i have now a very low opinion of her although i would appreciate it if she actually told me to my face rather than be 2 faced all the time. At the end of the day, those in close proximity of me know the truth and that is all that matters. Ignorant people, there are lots of, but family you would think that they would at least read up about this illness and find ways to help rather than bitch!!.

Keep going darling. Everyone here knows the truth. Soft hugs. xxxxxxxx
Last edited by djclall on Mon Jun 09, 2014 11:22 pm, edited 1 time in total.
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Re: hard to keep going sometimes...

Postby flatbunny » Mon Jun 09, 2014 1:28 am

Know how you feel. I've had bad reactions to Fibro admittedly most of them before I was diagnosed. People including my then GP didn't think it was anything more than tiredness and depression. I quit my job before I was sacked. They were of the opinion that I must be not doing enough to look after myself, they said as much in a back to work interview because I had been off sick so often, even though I was in tears trying to explain that none of the sick leave was made up and that I really didn't know why I was so ill all the time other than some bad luck with catching stuff what with a little one bringing colds home, being a tired mum etc, not knowing I was going through a breakdown into Fibro.

Up to that point I was off literally once a year with bad flu. That was it, and although they knew that they still wouldn't believe I wasn't making it up! They even refused me going to an NHS walk in centre mid shift because I felt that ill with nearly no voice, so I made an appointment with my GP the next morning which work was non to happy about to be signed off with Laryngitis which is very spreadable and I had actually caught it off a co-worker who was also not let off sick!

You see that's how it started, never getting 'back to normal' after I lost Ben, a symptom of PTSD (I still believe I went back to work too soon), having to drink more caffeine, catching more colds and viruses than normal, feeling run down all the time, starting to get permanent aches when exerting, back problems etc that me and my GP put down to being a new mum at the time when I had my successful bub and my history of depression. But instead of slowly getting better as Harv got bigger and slept more - I even had another bub Ozzy not knowing what was to come, but it just got worse and worse until I was bed bound for weeks at a time with a GP who, I know now, doesn't even believe Fibro exists!

I have had extended family in law be nasty to me when I was going through my breakdown into Fibro after I lost my baby. In their opinion I wasn't doing enough or working hard enough. I'm not trying to be trite and I know having a miscarriage is bad but she was acting like me loosing my bub at full term could not have been as bad as what she went through with her miscarriage and why was I not 'getting over it'.

I also have had other family giving 'advice' like just have a cuppa and get on and do. They were proved wrong and now they are at least civil now I have a diagnosis especially as I was also going through a second major bout of PTSD as well as PNP/PND even though the GP as usual didn't pick up on the Post Natal Psychosis linked to my PTSD and PND together! People take one look at my age and assume that because I am 'young' at 33 that my walking stick must be just because of my weight and nothing further. My weight has never caused a health problem.

I use my stick just so I have some chance of walking a short distance in constant agony due to Fibro! My weight only increase due to years being bed bound with a GP who refused point blank to come and give me a home visit on 3 separate occasions. If he had he would have seen actually just how bad it was as the only time I could go to see him was if I was on a 'better' day!

When we moved towns it was the best thing to ever happen to me. Suddenly I got a GP who believed me when I explained how bad things were and not just blaming me for not doing enough for the kids like Harv's old school did. It didn't matter how many times I said I was too ill to do homework with him and why I was sometimes late etc they just didn't listen and kept on me I had to do better.

They wouldn't listen when Harv was starting to get behavioural and toileting problems from being a young carer, looking after his little bro, worrying over a sick Mum all the time, they were ready to expel him and just wouldn't listen. Thanks to the new school once we moved, they have really supported all of us as a whole family and thanks to all the hard work they have done for him he is not expelled!

My GP believed me! I was given the usual tests she said I would have to do again because it was a different surgery, but then she picked up the phone to he Rheumatology dept and got me an appointment! That's all the other one had to do and he refused to do it, I mean how could he be wrong? How dare anyone question him? Anyhoo . . .

I got a diagnosis which meant I could look it up. See how to help myself and have the power to shut people up! Oh that felt good! The people who thought I was lazy and a drama queen and were nasty to me were suddenly surrounded by people who before would shrink back but then started to question that person's actions and attitudes and that it wasn't just me 'moaning' about them all the time! I am lucky also that I have always had other fantastic family around me who love and support me and know I am really that ill!

I still have a Mum-in-law who still can't get her head around just how ill I really am even though she herself has arthritis and joint problems - she just thinks if I 'got out more' or 'made myself get out of bed' I would get better quicker. She also likes to remind me about the bad side effects of taking paracetemol and ibuprofen all the time and what it could do to my liver and kidneys.

Yeah I know but what else am I supposed to do? I am also on Codeine and that has a whole lotta other problems with it! She already knows I can't take Tramadol or Pregabalin because it made me much worse! LOL Anyone who knows me from before knows how much energy, how driven I have always been and would know that if I can't get out of bed, no one in the same situation can! The only reason my bed bound state was not complete 100% was because of my stamina and tenacity!

I am lucky that now I have people and services working for me rather than against me and I am slowly getting better, although for the past few weeks I have been bed ridden again in agony, I believe it is a temporary blip and it will pass to only a couple times a week again! Hugs to you, you are doing great and don't let anyone make you feel ashamed or faking it. We know you aren't and we also know it's easier said than done - but we will beat this!
Last edited by FluppyPuffy on Mon Jun 09, 2014 9:45 am, edited 2 times in total.
Reason: split into smaller paragraphs for an easier read
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Re: hard to keep going sometimes...

Postby Garyl » Mon Jun 09, 2014 9:31 am

I feel for you is hard in a way am glad i am single, due to other health probs before fibro i decided i did not want to burden people with my health problems.

This problem of disbelief is being made worse by this callous Governments attacks on the sick and disabled.

I have been awake since 3am pains bad and the matress needed turning today as it is a orthopedic one i have to turn it every 4 weeks am now suffering will be ok in a couple of hours pains will ease as the pain relief kicks in.

We have to keep going best we can as no one understands how we suffer, always remember when first diagnosed 8 ytears ago the specilist eyes were glazed over and he kept apologising, told him was not his fault to which he replied i accept that but i cannot accept i am unable to cure you or ease your pain, you will be with this till you die. Sadly he had to go home to look after his ailing father in India as he was the eldest child,Lost a good specialist , who did care.
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Re: hard to keep going sometimes...

Postby migrembe » Mon Jun 09, 2014 10:30 am

After having a reasonable day yesterday and not doing very much either and then i seem to sleep ok, when i woke at 3.30am i felt ok. So i was shocked when i woke up at 7 feelings like i had been trampled on.

However children, who are not yet adult in age, should not be looking after us. There is a big difference in bringing us a cuppa and helping us in and out of the bath and getting dressed. If we are at that stage then maybe what we actually need is a carer to help with those things. It is not fair to take a child's childhood away from them no matter how much they want to help us.
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Re: hard to keep going sometimes...

Postby FluppyPuffy » Mon Jun 09, 2014 11:54 am

It is hard to keep going sometimes, I know from my own experiences that, sometimes, the idea of giving up can be so tempting. Even when I've been at that point tho, there is still something that keeps me going, and I'm glad that I do as that little spark of brightness makes all the difference.
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