It is such a comfort to read the care and love you all give to people. This past two weeks has been so difficult for me. Someone phoned me last week and asked me how I was feeling and when I told the person the reply came back ‘everytime I phone you, you are not well’.If only people could understand even though I have given a letter saying My name is Fibromyalgia … Early hours Monday 16th I fainted in the wetroom (concrete floor), spent the day in hospital. On the Thursday I had a fasting blood test not over the Monday! This week on Monday I was back at the hospital (went by Patient Transport) having an injection and then blood being taken every 30 minutes for 5 hours. Now I do not know what to do with myself because the pain from fibro is high. I am sure once my body recovers from the trauma I will not feel so sorry for myself.
I’m sorry to say it like this but for many of us with rare conditions your experiences are not unusual. Lots of people have the idea you get sick, you rest, you recover and life goes on. But for those of us who have ongoing reoccurring issues this scenario just doesn’t happen and some people will never understand let alone comprehend it. Personally I got so sick of the judgements of others They’d ask and I’d go ‘I’m fine’, my wife has been about the only one who knows that my tone tells more than my words. A ‘yea, I’m fine’ a little upbeat sounds good, but then a ‘yea, I’m fine’ but sounding like I’ve just scrapped myself off of the footpath is more a ‘I’m not fine but I’d rather you didn’t know that’ sort of thing.
If I was ‘truly’ honest every time someone asked it would get real old, real quick. Occasionally I might say ‘Don’t ask, you DO NOT want to know…’ (or I don’t want to tell you the trurth) I mean, I know I look damn awful when I’m in pain. My eye closes, the side of my face droops and then someone will say something like ‘You don’t look so good…’ I want to scream 'YA RECKON???" but instead I just say 'You think it looks bad from your side, you want to have a look from this side" they soon get the message. What they can see is a milli fraction of what I’m trying to manage.
At times others just don’t get it and they never will. At times I’ve tried to educate them, but sometimes some people just look at me like I’m crazy or I have a 3rd eye in the centre of my forehead. Those are the people who will NEVER understand, so when they ask… …‘Yea, I’m fine’ is about all they get.
Merl from the Modsupport Team
I needed to receive your reply. Thank you for telling me how it is. I will try not to let others remarks get me down so much and just give a reply OK. Mind you saying I am OK, they only need to look at my face to see all the bruises to know I am not OK!!!
I’m so sorry for what you’ve been going through! Did they find out why you fainted on the 16th? As for the person that called you, it can be really hurtful when folks have no sympathy and make remarks like that. I have come to know which friends really care and truly want to know how I am doing. And, then there are those people who (just like Merl stated), I will reply to, “I’m doing okay.” I think some folks say “How are you?” just like they would say “Good morning” or “Hi there.” They are just greeting you and aren’t looking for a real conversation. That’s why it sucks that someone would call you on the phone, ask how you are, and then make a thoughtless remark when you answer truthfully. Merl’s right - They just DON’T GET IT! My hubby is great, but I’m sure he gets tired of me feeling bad, day after day. Well, I’m tired of it, too, but my body doesn’t give me a choice on the matter.
Sweet lady, I do not think that you are feeling sorry for yourself! You have been through a LOT and it has caused your fibro to flare, which makes you feel even worse. I’m really glad that you reached out. Please know that, even though most of the world doesn’t understand, those of us in this community are right there with you - We get it.
Please take care of yourself and let us know how you are doing! Hang in there!
Thank you AussieMom for your encouragement. I am hoping the blood tests I had on Monday will reveal the cause. I know I am subject of passing out because of low blood pressure but not fainted this year. When I have fainted before just a couple of hours rest and I am fine but not this time. Whether it is because I must have fallen flat on my face and also I hit the top of my head on the radiator but I am just not myself.
Sorry you are having very hard time.I hate getting that reply from people.I have just started to say am fine😏I am so thank for this group and the support.
The phrase that caught my attention here is “I’ll stop feeling sorry for myself”. This is NOT feeling sorry for yourself. That phrase implies you are dealing with something that is not genuinely that bad. This is precisely the opposite of what you are dealing with. You also referred to trauma, this is true.
We have all been trained by societal norms to believe we should always be ok (or say it regardless, because that is good manners). We are likewise trained to believe not being able to handle everything AND the pain etc that goes with Fibro; all with a smile indicates FAULT on our part. It doesn’t- it shows how much extra we juggle when we can’t just smile and get on with it.
We need to advocate for ourselves by shaping the conversations we have with friends/family so they know it isn’t “feeling sorry for ourselves” or just complaining. They need to know it comes from a genuine place where we want help/understanding rather than sympathy. Having read your post I think I now need to have this conversation with a friend of mine (I’d skip answering and ask how she was instead, now she keeps asking for an answer I don’t want to give, and I’m so sick of lying and acting like it’s fine when it isn’t). We deal with this ALL the time, not just when it is convenient or we don’t want to do something, so why should our answer have to change if our situation hasn’t.
Please don’t let this type of comment change your view of yourself to something negative. It’s clear in your post that you still do everything you can and you deserve to have that recognised. Sadly for us, it often means we have to be the ones recognising this for ourselves (and may be the only ones who do) because they don’t get it and can’t when they haven’t had to walk our path.
Hoping you get helpful answers soon, and actually get to feel better. Hang in there! Sending big virtual hugs your way (the best kind- they don’t hurt!)
Wow - That sounds awful, Rosebud74! You could have a concusion after something like that. Please take care of yourself, sweet lady And, let us know how you’re doing!
@rosebud74 How have you been doing? I have been looking through some old threads and It’s been some time since there was anything posted here. Hopefully 2021 has been good to you. The warmer weather has arrived which can be a good thing. I just thought I would say hi and check on you.
Wishing you well,
Thank you Davey02766 for checking up on me, that is so kind of you. I am having a better day but I never have a complete day without pain and fatigue. Last week I had further blood tests but as predicted nothing showed up for Fibro or Austio Arthritis. My doctor just explained to me that at my age and all my medically conditions I have it is something I have just got to learn live with. I think the medical folk must get very frustrated when they have patients like us and they cannot help them. I try to do stretching exercises to help with the pain but more often then not I am just too tired to do them! One of the things that helps me is late afternoon or sometimes early afternoon I get undressed into night clothes just to relieve the pressure from wearing tighter clothes, it is like tacking a painkiller. It is very windy, wet and cold here. When the weather is this bad I just do not leave the house.
It seems redundant to try to explain to others what fibro feels like, as they cannot understand something that is not visual. I never mention it to anyone at all, except on here where there is understanding. I was diagnosed 16 years ago, and after years of assorted medications to control pain, I am now taking zero pharmaceuticals after realizing they run their course, then turn against you. I feel much better off the meds, the side effects were just not worth it. For insomnia, I do deep cleansing breathing when I get into bed, we need more oxygen, it really helps to relax when you’re whole body is stressed from coping all day…