With Fibromyalgia and other chronic pain you can’t always do everything you want, and we will always be limited in what we can do, but there is always something you can do instead – always an alternative.
While you may not be able to go to the amusement park with your friends/ family because the rides will hurt too much or because you can’t be on your feet all day or maybe it’s an all day thing that you can’t do or for whatever other reason, there are other things you can you. Maybe you can go mini-golfing with friends instead. Still a social activity, still something physical, still something fun and still hanging out with your friends. If that’s still outside of your wheelhouse, try just going out for a drink even just coffee to get out and be with those you love. If you are bedridden, why not a virtual chat?
You can apply this to all other aspects of your life. Certain things you can not do and may never be able to do again, but there are always things you can do.
I first started having Endometriosis symptoms in my early teens. I started having CFSME symptoms in my mid-teen. My Fibromyalgia was triggered by a bout of of mononucleosis at age 19 which got slowly got worse…
Endometriosis was diagnosed when I was 26, Fibromyalgia at age 33, and CFSME at age 37. You’d think all these large diagnoses would qualify me easily for ODSP.
Nope.
My initial submission for ODSP, Ontario provincial disability benefits included documentation for endometriosis, fibromyalgia, edible syndrome, TMJ, asthma, IBS.. All of these diagnoses…No love..
From there I hired a lawyer you turned out to be a real dick and didn’t do squat. To keep my application current, I would request reconsideration based on regular bloodwork until I was able to get the needed documents.
When I requested a change of attorney I had to go into the tribunal, on the day of a huge snowstorm, with a broken foot.. The person who denied me didn’t even bother to show so the tribunal granted me the new legal representation – Durham Legal Clinic.
By this time, I’d seen Dr Alison Bested at the Environmental Health Clinic & had just become one of her patients in her private practice. I had another diagnosis of CFSME by her staff..
The legal clinic requested additional information from Dr Bested. They sent her a very specific document. This document basically outlined what I can and what I cannot do.
It covered the four broad areas of physical limitation. Mobility issues are those such as how far I can walk, do I need assistance devices for movement, how fast I can move – slow shuffle to jogging to an (ROTFL) out & out run. Upper body tasks include how much weight I can carry, how well I can push or pull heavy objects. Stair climbing functions are how many steps I can take, how fast I can climb. Activities of daily living include my abilities to eat, bathe, dress, sleep, administer my medications, preparing food & personal hygiene. She described me on my worst day.
My worst day, my pain is high. I can not walk more than to the bathroom – sometimes not even that far. This can cause issues with elimination. I am, at that point, unable to take any stairs, or carry anything heavier than a small plastic glass of water to take medication. I can not prepare my own food, let alone eat. Showering, brushing hair, cleaning my teeth would be beyond me at my worst..
Issues with Mobility, Stair climbing, , Upper-body tests & Activities of Daily Living like eating, showering and sleeping.
If you then you add my mental health health into the mix, especially as there were suicide attempts by this time, I was finally approved.
This same documentation, several months later, was used to successfully get approved by CPP-D, the disability program for Canadians.
It took several years for this process to complete.
According to the World Health Organization, disability has three components:
Impairment in a person’s body structure or function, either physical or mental. Examples include loss of a limb, loss of vision or memory loss.
Activity limitation, such as difficulty seeing, hearing, walking, or problem solving.
Participation restrictions to normal daily activities. Examples include working, and engaging in social & recreational activities,
So as you can see, not all persons with disability have necessarily have a physical component. Additionally, there are medical conditions and disabilities that are not visible including diabetes, lupus & fibromyalgia.
I’m a good example of that in that I have fibromyalgia and other issues but I don’t use a cane at the moment. As a result, I don’t look like I have an impairment . Pain is invisible so they don’t know and cannot tell that my pain level is a 1/10 (I know, very funny) or 8/10 today.
The Spoon Theory is a document written by Christine Miserandino. It is based on a conversation with a friend of hers who was trying to understand her chronic invisible illness. In Christine’s case, she has Lupus.
So, Christine tried to explain how her health limits her, but was having problems. She was at a diner eating some french fries, so she came up with equating a spoon to a unit of energy. For example 1 spoon for brushing your teeth, 2 spoons for taking out the trash, 3 spoons for a shower, 4 spoons to make dinner, etc.. We, with chronic health issues have a limited number of “spoons” or energy and when it’s gone it’s gone.
Check out this document because it is a very relatable way of explaining to most about chronic illness.. I’m not just talking Lupus, but other invisible medical conditions including Fibromyalgia, Ehlers-Danlos syndrome, Cystic Fibrosis, ME/CFS,
Here in on the east side of the Greater Toronto Area in Ontario Canada, we are moving into stage 3 of reopening tomorrow. What this means “Facilities for sports and recreational fitness activities (e.g., gyms, fitness studios)” are allowed to open. This includes my local gym, the Durham YMCA.
The following stipulations are in place by the provincial government:
Physical distancing must be maintained, except if playing a team sport or as needed for personal training.
The total number of people permitted in areas containing weights or exercise machines is limited to the number of people that can maintain physical distancing of at least two metres, which cannot exceed the indoor gathering limit of 50 people.
The total number people permitted in classes or organized activities at any one time is limited to the number of people that can maintain physical distancing of at least two metres, and cannot exceed the indoor gathering limit of 50 people or the outdoor limit of 100.
Assigned spaces are strongly recommended for organized fitness classes (e.g., by marking circles on the floor to designate where each person should exercise).
Gathering limits do not apply in all other areas (e.g., pools, tennis courts and rinks).
Equipment must be cleaned and disinfected between user sets or at the end of a game.
Any washrooms, locker rooms, change rooms, showers or similar amenities made available to the public must be cleaned and disinfected frequently.
Steam rooms and saunas are not yet permitted to open.
I have some concerns about this. Our “Plus” change room is fairly small to accommodate the extra features we pay for. There is going to be very little room to social distance.
Our additional features include the steam room and the hot tub. I’m figuring since the steam room is unavailable then so is the hot tub. But what about the pool? I guess since there are no aqua-fit classes they just allow free swim? How is that safe? Since I walk my laps in the pool instead of swimming, should I be wearing a mask?
How are they planning on running an Arriba class? The Wednesday & Thursday classes where in a half gym & there was usually 50 people in that space. Triple that in the full gym on Saturday mornings. There is no way to social distance that many people. And given the distance we move during class, we’d likely only have room for maybe 25 people so as to stay out of everyone else’s breathing space. I don’t want to be dancing in the residual saliva in the air from when the person beside me is breathing hard from exercise.
I also noticed no yoga classes. I understand not being able to run a yoga class using one of the studios due to size, but why not a class in the gymnasium. Yes, a little louder & a little brighter, but an evening class would help that.
Social distancing in the showers? There only 5-6 showers total in the Plus section.
Now, almost all the features of a plus membership restricted which includes Steam Room, Hot Tub, Private Showers, Peace and Quiet-no kids, Lounging Area, Personal Hygiene Products & Towel Service. Without most of this, do you think we’d get a price break until it opens back up? Good God no. In fact, they cancelled the pilot program I was in so my membership is going to go up by about $20
Honestly, I’m not entirely sure I am comfortable going back to the gym quite yet. Being at higher risk makes me hesitate, especially when new cases reported are climbing back up towards 200.
Not All Disabilities Are Visible
By Kate Mitchell, May 3, 2016
Original Post: Huffington Post
Too often recently, friends or online acquaintances of mine have been accused of faking their disability. I personally am also disabled. I have autoimmune arthritis, fibromyalgia, anemia of chronic inflammation, and asthma. I’ve been in pain every day since 2001, and over the past 6 years, it has become moderate to severe every day. I experience pain in 54 joints. I am unable to work full-time or go to school full-time at the moment. I take 40 pills a day and 4 inhalers. I’m at the doctor every single week. I’ve had 5 surgeries. But you would never know any of this by just looking at a picture of me. And I’m not alone, as the vast majority of people who have disabilities have invisible ones. But because the majority of people have the idea that everyone who is disabled looks disabled, too many treat disabled people poorly. They shame them, don’t allow them to park in certain places, don’t allow them to use a wheelchair, and more. This is so beyond not okay, and it stems from the misconception that everyone who is disabled looks disabled.
What makes someone disabled? The definition of disabled is “incapacitated by illness or injury” or “physically or mentally impaired in a way that substantially limits activity especially in relation to employment or education.” As I learned while studying for my degree in secondary education, someone is handicapped if their incapacitation is temporary and disabled if it is permanent. For example, someone who has had ankle surgery is handicapped until they recover. If you’d like to read more about this, Emory University School of Medicine has a great explanation.
Everyone who is disabled looks disabled, right? Nope! As the folks at Invisible Illness Awareness Week figured out based on data from the 2002 US Census Bureau, 96 percent of people who live with an illness live with an invisible one, and 73 percent of people who live with a severe disability do not use devices like a wheelchair. This means that when you look at them, you wouldn’t know that they’re disabled. Think about how many people you see who are clearly disabled during an average week. Statistically, for every person you’ve seen who looks disabled, you’ve seen at least 4 more who are disabled but don’t look it.
So how can you tell if someone is disabled? Often, you can’t, so if someone says that they are, you need to take them at their word. If someone looks fine but parks in disabled parking — and have a placard for it — you can’t accuse them of faking it. If someone looks fine but wants or needs a wheelchair, don’t question it.
At the same time, we do need to make sure that people who don’t have disabled parking don’t park in those spots. They also can’t park there with their blinkers on while they wait for someone. If you believe that you should be able to park there because of a health issue, talk to your doctor. If your doctor disagrees with you, don’t park there. If your doctor agrees with you, you still need to wait until you get your placard in the mail before you park there. Anyone who parks in the disabled parking spots without a placard of plate is breaking the law.
What can you do about that? If you see someone park in the disabled parking spot without a placard, call them out on it or write down their license plate and contact the police. People parking in those spots without a placard are breaking the law pure and simple. The more they get away with it, the more they will do it. Oh, and doing this can prevent someone who needs it from going somewhere and doing something they can’t do without the parking. However, before bringing it up with someone, double check to see if they have a placard and you just can’t see it. Verbally attacking someone because you don’t think they’re disabled makes their life already harder than it needs to be.
My biggest issue with my medical issues is me. I have so much trouble accepting my limitations. I am still trying to figure out how much I can and can not do. It’s more the can not that is my issue. I used to be way more than I am now. I used to be intelligent; Once upon a time I had an IQ of about 180 which is the beginning of genius. I’m not meaning to brag, just illustrate how much I’ve gone down hill.. I’m now at 130-140, which is considered average (to my knowledge).. That’s a *huge* drop, but it’s all from the fibro.
I used to be physical. I played soccer in a ladies league (the term ‘ladies’ here is used loosely) with 2-3 games a week and I played an aggressive & physical game. I was also involved in scouting, as a youth member, as a adult member, as a leader, as a group or area representative. As a result, I was very physical – hiking, camping, marksmanship, skiing, skating, all in different types of weather. & yes, I have camped outdoors in the cold weather and the snow. I can not do any of that. It’s not struggling with just those losses, but also the loss of the ability to function doing ‘normal’ day-to-day stuff like laundry, cleaning floors, vacuuming, washing walls or windows, and cleaning the bathroom.. Or even worse, I flare after being around my nieces & my nephew.. Moreso my nephew cuz he’s more physical, still into aggressive roughhousing. (Çuz he doesn’t get a lot from Dad – long story, not really Dad’s fault) I should be able to spend time with my family without getting sick. I just don’t know how to. Any suggestions on how to deal with this issue and help me accept my limitations? Feedback would be greatly appreciated. ~ Thanks.
Fibromyalgia 
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