COVID19 and Me

I’ve spoken to many people in the fibro community about this & it seems I’m not the only one deteriorating.. With over 3 months since many of our non-western medical treatments.. So, for most of us it’s only medications that we have access to, and if we are lucky, pain injections..

We are finding out how much our treatments help us.. Massage Therapy, Physiotherapy, Acupuncture, Osteopathy, Chiropractic Care.. For some it’s the ability to exercise when all pools and gyms have closed including even private facilities. I’m sure there are other possible treatments that I haven’t mentioned – remind me of what they are!!

Personally, I’ve lost physiotherapy & osteopathy, massage therapy, aquafit with other exercise at the gym, and the hot tub – God, I miss the hot tub.

But what I am missing most? Socialization..I’m still in contact with friends, and doing my scouting thing, but it’s not the same. I’ve only seen my best friend once through the glass door & subsequently only on Zoom. I haven’t heard from some of my Cub Scouts in months since we went virtual. There are three that despite attempts for contact, that we have not heard hide nor hair of.

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Note: the above was originally written in mid-June before we started to re-open in my area. In the last week I have finally had social distance visits with my 2 best friends. I was glad to see them both.

I’ve also seen my RMT, I see my Osteopath next week. And even have my hair appointment with my Mom on Friday.

Now, some pools have opened and the splash pads. Unfortunately, some community & all private gyms like mine are not open.

About Fibro (Pt II)

This is a long read, but if you haven’t ever seen/read it, then it is most def worth the time. Because of it’s length, I’ve made it 2 posts. Fell free to use it for your own use if you so desire.

About Fibromyalgia

Being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
The difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say, “Oh, you’re sounding better!”. I am not better, I am sounding happy. If you want to comment on that, you’re welcome.
Being able to stand up for ten minutes, doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one it gets more confusing.
Repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “being sociable” and so on … it applies to everything. That’s what FMS does to you. – Please understand that FMS is variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying, “But you did it before!”, if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
“Getting out and doing things” does not make me feel better, and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to loose (or gain) weight, get this exercise machine, join this gym, try these classes… may frustrate me to tears, and is not correct… if I was capable of doing these things, don’t you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do. Another statement that hurts is, “You just need to push yourself more, exercise harder…” Obviously FMS deals directly with muscles, and because our muscles don’t repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.
If I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m out for the day (or whatever). FMS does not forgive. – If you want to suggest a cure to me, don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with FMS then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS, if something worked we would KNOW.
If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I’ll take what you said and maybe discuss it with my doctor.

In many ways I depend on you – people who are not sick – I need you to visit me when I am too sick to go out… Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the the doctor, or to the physical therapist. I need you on a different level too . You’re my link to the outside world… if you don’t come to visit me then I might not get to see you. … and, as much as it’s possible, I need you to understand me.

What do I do?

For my fibromyalgia, I currently take the following Medications/supplements

• Multi-vitamin – Naturapathy Dr does not recommend Centrum or most pharmacy brand multi’s
• Calcium & Magnesium with vitamin D – Calcium cuz Women with Endo are more susceptible to Osteoporosis. Mg & D to help absorb the Calcium. The Magnesium also to help with muscle spasms & charlie horses. I have found that it has helped.
• Fish oils – Generic fish oils, minimum 1000mg a day .. Well, I try to. Naturapathy Dr recommended 1000mg-3000mg daily of the EPA+DHA to help with mental acuity. I’m still waiting for the fog to lift, but I’m not usually getting enough to impact because I fog up & forget.. Lovely catch 22 there.
• B complex to help with stress and ensure that I get enough B’s. No, I don’t take a stress formula. Just a normal B complex.. either 50mg or 100mg
• Codeine Contin for maintenance pain.
• Tylenol #3 for breakthrough pain
• Oxycodone for severe breakthrough pain
• Flexeril (Cyclobenzaprine) as a muscle relaxer. I find it better than anything OTC..
• Probiotics to help regulate my digestive track – it works, ‘cept when I have an IBS flare or food sensitivity
• NSAID, but it’s for my Endometriosis, so I don’t really know if it does impact my FMS or not.

For my fibromyalgia, I currently participate in the following exercise:

• Aqua-fit, really carefully – I’m just getting back into exercise, so I am trying to get to the gentle classes. My local YMCA gym has a class or arthritics and for osteoporosis. Aqua-fit is a good choice because of the buoyancy of the water, it doesn’t impact my knees, and it’s a gentle cardio
• Seriously, right now that’s it. I need access to a hot tub to do further exercise to keep my body warm.

For my fibromyalgia, I intend to return to the following exercises:

• Yoga with the hot tub – Yoga provides gentle stretching while working on core strength and balance. The hot tub helps to keep muscles relaxed afterward.
• Keeping up with Aqua-fit – see above 🙂
• Walking the track to music with the hot tub – I got into walking when my nieces were born, walking with my sister. After I joined the Y and my nephew was born, I would take him in his stroller to walk him around the track. He’s too old now, but I have found it enjoyable with my MP3 player (or CD player back then). I sometimes dance a little bit and my pace changes with the music I’m listening to. It’s hard to overexert myself. 🙂 The hot tub helps to keep muscles relaxed afterward.

A benefit from the exercise is that I tend to be tired out afterward and relaxed. This makes evening workouts ideal in that I go home, go straight to bed and will sleep well, with a decent amount of healing rest. This improves me, physically, emotionally and mentally for the next day.

For my fibromyalgia. my spiritual side is limited. I don’t go to church often, however I do find solace in my home church’s sanctuary. I’ve moved away from my home church and have yet to try out the sanctuary here. I also find the same ‘state of grace’ from music, especially my churchy music 🙂

For my fibromyalgia, because of my physical limitation, I am limited socially. Most of my social interaction is via the internet on Twitter, Facebook, Email, etc.. The alternative to that in real life is with my SO and his friends. Most of my friends no longer talk to me, or are too far away for more than email. The classes as the Y present a new socialization source, which I hope to be helpful. With the improvement of my health I would like to return to scouting in some sort of part-time or limited capacity.

For my fibromyalgia and my cognitive abilities, I am starting this blog. It will help keep me thinking and requires research. It also provides a creative outlet. I also enjoy doing word searches and have, on recommendation on my therapist, started to colour and have other crafts options available to me.

For my fibromyalgia and an emotional aspect, I have a councilor and have been placed on anti-depressants. While my time with her is limited I do find that I feel better after I speak with her. Additionally I have the support with my SO. While sometimes he can not understand and becomes frustrated, I know he only has best intentions where I am concerned.

How do I cope? Not well. Other than the limited exercise mentioned above, the odd screaming match and the rarer still church visit, I have no real outlets.. Which sucks. Before I got sick, my outlets for frustration and anger and stress were physical. With the fibro, I have lost that. Any suggestions are welcome 🙂