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Forced into hiding

Jul 09, 2016 9:42 PM

I have been using my grandmothers assistive devices and then my mother would laugh a nervous laugh my dad would get emotionaland teary eyed . I'd feel bad and embarrassed forced into hiding. limping really hard in blinding pain without them to hide the fact that I need them... If I don't use them or talk about the pain my family forgets it just seems to then that I live to stay in bed in the house all day... Well today I brought my own cane in my favorite shade of purple I'm tired of hiding...I'm tied of hurting in secretπŸ’” I don't want them to be angry or frustrated but I need it... For me😒😟 I wish it wasn't this hard

Jul 09, 2016 9:55 PM

I'm right with you. I feel my family still wants to ignore it. And at times they mock me. I express a pain or show a sign of pain limping stumbling ect. Minutes later they have the same pain or issue. I've gotten to where I just ignore them and move to another room. Bit it angers me badly. I support you in your choice and right to have help to live your life. Use any and all devices available to you. Your goal every day is to make your day as pain free as possible.

Jul 09, 2016 10:03 PM

Thank you:) it must be they're afraid of it and it's just easier to ignore and react negatively towards it... I wish they understood how hurtful it is to us and how much courage it takes to act "normal" in suffering as not to inconvenience anyone or have anyone feel uncomfortable... It's extremely backwards why should I pretend so you don't feel bad about my illness 😐

Jul 09, 2016 10:18 PM

Exactly,ive had family in town visiting all weekend. And I've not been taking my pain meds so I won't be groggy while they r here. Meanwhile I'm being bear hugged and sitting for long periods of time. And I'm steps from tears the whole day. We should not have to hide. Although I know exactly how you feel.

Jul 09, 2016 11:03 PM

I hear you. My son doesn't believe fibromyalgia is real. I think he must have asked a doctor about it (one of the top docs in the province) who apparently doesn't believe in it. I think my son believes me when I say I am in pain, he just doesn't believe the label. Yesterday, he got to see brain fog in action (or inaction, my brain definitely wasn't up to par). I'm hoping to find a couple of reputable websites for him to peruse.

Jul 10, 2016 6:30 AM

That's just so disgusting to me that a doctor would use their bias to discount science and facts. I'm so sorry..yes show him some websites maybe even a book so he can feel closer to you by understanding a few things about this very real illness. I feel afraid of meeting and getting choose to new people just for this reason... It's hard to explain and doctors have bias and conflicting views it's unbelievably sad.

Jul 10, 2016 3:05 PM

I understand completly. I only live with my husband, and I do pretend around my grown kids because they already dont want to hear about my struggles. They have a point because I understand their need to want to fix me for good, i.e. cure me. Their response to my pain is that I should do more like swim, be more active, lose weight, take weed, etc and that will fix me..

Jul 10, 2016 5:36 PM

I feel like it's just easier for them to be mad mocking, numb, frustrated or annoyed.Even if it's unintentional that's what they give off because they can't help so they do the latter as a horrible copping mechanism.. Just today my nephew wanted to play catch I told him no I can't get up I'm in too much pain be offered to help me in a wheel chair to play with him but I couldn't sitting in church all day was enough I just needed to lay down...after begging I sit in different ways for10 mins... he left me alone frustrated and annoyed just get up he says... Just get upπŸ’”

Jul 10, 2016 5:39 PM

It's so hurtful but understanding they don't want us to hurt they want us to be the same as they are...it's the lack of understating that kills or strains relationships I completely understand I wish there were more we could do to make them understand.

Jul 10, 2016 5:46 PM

Similar to what you all have said. I had a breakthrough moment today where I was ask to do something by my mom and I flat out said no... no..I'm not going over there. And she looked at me like why are u saying this. And didn't even respond to her dismay. I simply said if u want this done then u can get up and go do it. She really didn't like that. However, for the last two years since my illness has really Intensified I would do everything and anything my family asked of me. No matter how much pain I was in. But this last month has been hell on me and my body and I'm really running out strength to do anything. So I'm in self preservation mode now.

Jul 10, 2016 6:13 PM

Lol I love your post! we have to get strong enough to stop pretending and help ourselves. At the end of the day not being able to say no it accept the cane out wheel chair aid on a fun family outing only ends up hurting only us. I'm coming to terms slowly but surely. Teaching myself it's ok and many times necessary to say NO and yes I need help in order to reduce pain even slightly to make it through the day..

Jul 10, 2016 7:50 PM

My husband always sends mixed signals. He will seem understanding when I hurt so much with nerve pain as he had one bout that took him down. I had to help him put his shoes & socks on. The man that has never missed a day of work 41 years came home early & went to bed!
He will help if I ask, but I am pretty independen person. But when I told him I have to use cane when walking out to hospital appt. or a longer walk than wher their is no shopping cart, he made fun of me. I try so hard to do it myself, I am sure you all know what I mean.
Today I vacuumed the bedroom and felt like super woman!!!

Jul 10, 2016 8:23 PM

:) glad you were able to get a lot accomplished today!:) I honestly wish I could switch bodies with each of my loved ones at least once a week. I'm frustrated beyond comprehension. I can't stop crying tonight... I hate this lifeπŸ’”

Jul 11, 2016 2:36 AM

I am new here. Fibromyalgia. Feel so useless and a shadow of my firmer self. I used to be thin and run around fir everyone. Now, 20 years later I get scared that I will have to quit my sedentary job. I feel hope reading your stories and can relate. I feel like I am being punished. Slowly telling a few ppl that I have FM. I love my good days! Loathe my not so good days which take me down to crying jags and tears of anger. I hope this app helps me.

Jul 11, 2016 3:26 AM

OP, I think you did a great thing buying that cane. Great example of self care! And purple's one of my favourite colours πŸ˜ƒ

Jul 11, 2016 3:42 PM

I can understand what you are feeling. Parents hate admitting their kids are sick. I am a anaphylactic to traces of dairy, and my father says I'm "sensitive"to it.you're doing the right thing! You are dealing with awful pain, you don't need the emotional pain of hiding it as well

Jul 12, 2016 10:50 AM

If we don't take care of ourselves then no one else will. If we ignore the signals our body send & sometimes screams at us, because we don't want to say no to friends & family, then it's our fault when we suffer later.

Dreams29, It was very embarrassing & hard on me to start using a cane or walker, but my doctor told me to. I have imbalance and dizziness so the cane is to help me prevent falling. I'm only 54 a and I use it, or the Walker, and even public scooters. I no longer care what anyone thinks, says, or the looks I get. They don't know my body and the pain I deal with. When given an opportunity I do try to educate those who ask why. But I refuse to be too proud to be seen in public with assistive devices. My dad needs a walker or wheelchair because of his hips & knew joints, but he refused to even use a cane most of the time. It's embarrassing to him.

I love purple and almost bought a purple came. I purchased a cane with different birds all over it, and bought a rubber 4 footed tip that helps give more stabilization, which is hard with tremors. Drug stores now sell them, and they aren't like the ugly old 4 legged tips. Many elderly people on camera have asked me about the tip. You can't make your family accept your conditions. And it's very hard for parents to see their children worse off than they are. My dad always tears up and tells me to take care of myself. You do what's best for you! If you don't use a cane then fall & break a hip or leg bone, what then? Hugs & prayers for strength & courage to cope without being hurt by looks or remarks from others! πŸ™‚πŸ’•πŸ™πŸŒΈ

Jul 12, 2016 10:43 PM

Can't agree more. It's hard for them, it's hard for us! Understanding is key. Personally, I don't feel better with sympathy. I feel better when I'm understood. Not necessarily that someone has been in pain, but they are trying to understand and not invalidating. We can't control anyone else. I have emailed a couple articles that share the perspective of being in chronic pain to my siblings and 1 close friend. It was well received but I doubt my other family or friends would respond in the same way. I am still working on not letting others' looks or remarks upset me. One day I might get there!!! Hugs.

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