V’s Canary Cries

Guest Post by V from the USA

This was originally posted to an online support group. V granted her permission to share it here. She has been able to put this part of her life story into words that so many of us find hard to express, and I thank her deeply for sharing her words with you too.

 

Canary V

It’s about 1:30 a.m. and this is about the time where I start to feel despair about everything in my life. I just can’t seem to adapt to the isolation and lack of a routine or purpose. Also, I can’t seem to find any pain meds for my chronic pain. I have been in physical pain for so long.

I know this post may seem disjointed which is apropos considering how I feel.

I AM so tired of spinning my wheels…Along with MCS I have so many other medical issues…non terminal that I know of but still…I have asthma and allergies.. I can’t be around dogs or cats, the weather determines my breathing status for the day and my physical mobility.

I can only eat about 10 things and it’s exhausting to try to rotate these foods and I spend excessive time trying to plan. Even planning a rotation I still get itching throat and sometimes a swollen throat with some of the ten things I think I can eat…it’s horrible to start eating and not know how I will feel ..

The MCS..the ruler of my life.. I can’t stay in or go out ..I can’t have anyone over or go visit anyone. I do manage to go to the grocery store and had managed to go to a couple of other places but after last week it seems like I won’t be doing much of either at least for the immediate future.

I had back surgery and don’t think it was as successful as most .. the acute problem lessened but I developed more problems… I recently sprained my knees.. one worse than the other and still have issue…stairs, walking, lying down..

My feet are so very sore I don’t know why.. doctor’s tell me it’s aging and weight…but they hurt before I was this age and when I wasn’t overweight.

I HAVE so much back pain and no pain meds that I am not allergic too..I have many other medical issues and it’s so hard to manage.

I have no immediate or extended family and friends. Luckily, I have met some wonderful people here…and I am grateful, however, it is rare that I hear a human voice or share a face-to-face experience with anyone.

I am tired of not knowing what to do during the day.. I am stunted by MCS and pain…physical and emotional. I want to pick up the phone and talk about a tv show or the weather or something but there is no one to call..the silence is also killing me.

I AM aware that I have many blessings and try to go with that but lately I feel like I had (or thought) that I was holding on and that if I didn’t back slide there was a possibility that I could reverse or not make worse my issues…

I mean I have issues with sleeping (sleep apnea and all masks I have reacted too) I have asthma which is not controlled very well, I can’t really eat with peace of mind and have had so much testing, I have pain everywhere..places I didn’t thing could hurt, my back, my hip, my knees, my feet… mobility is an issue..so no sleeping, eating, moving, and the isolation..

I feel like I’ve crossed that line of decline..maybe I’ve been there a long time… on a decline..

I do feel that I can’t WILL myself out of his any longer.. the brain fog, the horror of not being connected really to anyone or anything. .the pain of reaching out by phone to organizations, people and exposing what I need only to be turned down. I am ok with being turned down.. I expect it.. but the ones that give me a glimmer of hope and never come through is painful.

I TRY to distract myself.. read, color, movies, sometimes walks, whatever I can manage.. but lately it doesn’t seem to work.

When I stop what I am doing I just think of what is the point of all of this suffering..

I am sorry to burden anyone here…I just know it’s a safe place..I can’t find phone counseling..even when I have…the therapists just don’t seem to get what I feel.. I don’t fit in.. I can’t stand the physical and emotional limitations…

I just don’t know what to do anymore.. it’s just exhausting to just be existing..

I think one person might miss me when I am gone, but mostly will be relieved for me and for them. I’ve live a long while and I can’t believe I am this alone, isolated..without medical help or compassion…..maybe I am overly sensitive, but it is how I feel.

Thank you for reading. I hope I have the courage to leave this post up. It’s so bleeping pathetic.

((( ♥ )))

Sharing our realities and lives is difficult when they are different from the lives we grew up imagining and planning for. We don’t have role models on tv or in the movies, or even in books.

Finding ways to stay emotionally and mentally healthy when we are isolated with socially inconvenient disabilities, in pain, without access to basic needs and services is a challenge that far too many of us face. The online support groups are life savers, but they are not enough. We, as human beings, need practical supports and services.

Please help us find ways to bridge the social and service gaps.


 

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8 responses to “V’s Canary Cries

  1. Wow, I feel SOOOO bad for V!!!!!! I have felt and experienced many of these things, but not the scary food/throat thing, and it sounds like she has more pain than I do. I am so glad she had the courage to leave the post up. Please pass on hugs to her and wishing I could help ease her suffering!!!!!!!

  2. V I read your post and I am sorry for your illness and being so lonely, it really reads like you are very sad and upset, this may be the time contact a mental health professional, this illness has left you isolated and vulnerable and it is fantastic you are letting people know your pain. So please contact someone and have a phone conversation, if you can’t do visits ask for phone consultations. If you don’t get help the 1st time keep asking till you get help.
    Can you use the computer and Internet, if so try a online social group to meet people to chat to. Search for MCS groups on line and join. Please do something that makes you feel good.
    Regards Cathy

    • Hi Cathy,
      V does make use of the online support groups, but they don’t make up for the lack of real human contact.
      Most people who have MCS/ES who have tried to get support from mental health practitioners, have been unable, as there are few if any accommodations made to provide safe and accessible spaces to meet in person, (see my last post about CMAJ saying how even hospitals are not providing safe access at this point in time) and if any do provide services over the phone that are covered by insurance programs, they are unaware of the challenges brought on from MCS/ES and can be very dismissive, which puts us in a position of having to be defensive or educating all the time. It’s exhausting and depressing, and then we require even more discouragement recovery time.

  3. Sending you hugs V – being chronically ill is devastating, and I can empathise with your feelings after going through so much hardship. Keep hanging in there.

  4. I feel so bad for you and know how you feel, I am trying very hard to hold on too but some days are really bad, Feel free to contact me at anytime on line and I will be glad to to talk to you. Best wishes and love sent

  5. Hi V,
    I feel your pain…literally. I have so much compassion for your you! I am housebound and suffering but lucky to have a devoted son who lives with me and cares for me. He lives like me when inside…wears the same raggy clothes as I have only a few old torn things I can tolerate..he goes out naked through the bathroom window onto our deck where his “world” clothes await. He cannot contaminate me with the outside world so he comes in naked right into the bath..and washes himself and anything else that enters. Our life as canaries is a crazy painful misunderstood one. I understand you V, and send all the love and caring through the cyber space possible XOXOXOX

    • Your son is a rare gem ❤ He must have an amazing mother!

      It's still so rare to have people in our lives who do what it takes to keep us safe from exposures and the disabling, or life-threatening effects.

      I know people who have been able to afford to build their own homes, who put in a detox chamber for the partner (and others), with showers and separate washers and dryers, and closets for the out there clothes, so that anyone coming in can shower and change into safe house clothes before entering the main living space.

      I really hope you are able to find a safer area and place to live Susy, so you can breathe and function better, and your son won't have to get dressed outside in the winter.

      It really shouldn't be so difficult to survive…

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