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.

About Fibro (Pt I)

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

My Need for Massage Therapy– If I get a massage every week, don’t envy me. My massage is not your massage. Consider how a massage would feel if that Charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is filled with painful knots. If I can stand the pain, regular massage can help, at least temporarily.

My Good Days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

My Uniqueness – Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else. (Keep an eye out for the reposting of the topic “My Fibro is Not Her Fibro”)

My Weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My body’s metabolism is broken, and nobody can tell me how to fix it. Often the medication I must take causes weight gain, but many of us with fibro suffer from severe IBS and lose weight.

My Stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

My Depression – Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian’s patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression, but it is a result of the Fibro.. not a cause of it.. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

My Sensitivities – I just can’t stand it! “It” could be any number of things: bright sunlight, loud or high-pitched noises, textures, odors, food, etc.. FMS has been described as the “aggravating everything disorder.” So don’t make me open the drapes or listen to your child scream. I really can’t stand it.

My Intolerance – I can’t stand heat, either. Or humidity. If I am a man, I may sweat…profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don’t feel compelled to point this shortcoming out to me. I know. And don’t be surprised if I shake uncontrollably when it’s cold. I don’t tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

My Clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

My Forgetfulness – Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age (Young people can get fibro) but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.

My Fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can’t help you with yard work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

My Pain – My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is VERY real.

Pride

They Can’t See It.

A few days ago my Dad asked me if I was gonna join him & Mom at the cottage this weekend. I said no. He stated they were going to my brother’s on Saturday then come home. I hedged, taking a deep breath, then my Dad stopped, looked at me and says “For Father’s Day.” Well played, Dad. Well played.

So, Satuday.. (Dad decided to just go up to my brother’s on Saturday & not the cottage.) And just getting out of bed, I can tell that this was not going to a great day.

Ok, 2 hour drive to my brother’s.. In the back seat of the van. We did have a pit stop part way up to get out & stretch. I also used my Obus Form back rest in the van. So, it could have been worse.

We got there shortly after 1.. I frgot take take my noon meds until about 2-2:30 only to realize, that while indie bring my Robes, I grabbed the wrong bottle & did not have my prescription muscle relaxer. So, I made do with the Robax instead.

We then spent the entire afternoon in lawns chairs on the grass, then the deck for dinner. As the day wore on, I became in more & more pain, even taking extra Tylenol, more than I’m supposed to.. I had no opportunity to rest, or to even lay down. The day, was not going well, health-wise.

But apparently I hid it well. Mom didn’t even know it was having significant problems. That is until we got in the van for the 2hr drive home. Then she noticed.. & asked if I was ok. Of course, I said no, but there’s not much to do about it.

Then I guess Dad figured that he should get us home faster and it was a really rough & jarring ride. That doesnt help, getting jostled around the back seat as he takes turn quickly and sharply.. But he did get us home 13 minutes faster than expected.

As you can tell by the publish time, it’s morning – a time i rarely see, but cuz of all that happened, I’m still awake and in pain cuz I overdid it.

So, I figure one of the following happened: 1. They Can’t see it. 2. They don’t see it, 3. They won’t see it . 4. I’m getting beat better at hiding it.

What do you think?

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Weight Loss Rewards

I have set myself 3 very specific weight goals to meet. Each goal is a non-food reward.. And before I get the reward, I must maintain that goal level for a month.

What are my rewards? Tattoos. I’ve been wanting to get some for a while now and figured this was a good way to get them. I have to work for them.

Goal 1: 100kg. Gets me out of the metric Onederland.

This Tattoo is my Scouting tat with a fleur-de-lis under the Koolaid man making a cub sign. I have it drawn up & ready to go. My niece drew it for me. This is going on the back of my shoulder and be only 1-1½ inches big This is what it looks like:

Goal Met & Maintained.

Goal 2: 200lb. Gets me into the imperial Onederland.

This tattoo to a nod to my chronic health issues. It’s to be a butterfly, in a 3D image with a shadow. The butterfly colour will be shades of purple..I have an idea of what I want, just is not drawn out. This is likely going on the opposite shoulder & will be about 2-3 inches in size This is kinda what I’m thinking:

As of June 6th, I am 7 lb away So, I’m getting close.

Goal 3: 180lb. This is where, I’m told, I should be. Final weight.

This tattoo will be a rose or set of roses in shades of pink, blue & purple with my alias on it somehow. I’m not exactly sure what design, but it will be bigger than the other two, depending on cost. Maybe something like this:

I am still 25-30lb from this point. .

No Cure but Remission

It’s amazing the number of times someone has come up to me and said oh I used to have Fibromyalgia and I did this to cure it. Well.. first of all there is NO CURE. They can not determine a cure if they don’t have a cause.

They can, however have treatments. Some of these treatments, while working for some but not for others. For example I have several Fibri Friends who say that Gabapentin was s saviour for them. I, however, found the opposite effects for that medication resulting in dramatically increased pain and a long-term flare.

Some treatment s for some people put us Fibromites into REMISSION. If you are cured, you didn’t have Fibro and were misdiagnosed. Your symotons are the result of something other medical condition.

Remission can but a full remission when, yes your pain and symptoms are gone, but they can return – and they will. There’s also partial remission where pain levels drop, fatigue levels drop, functionality increases and you are feeling ‘better’..

I was on this path when COVID19 hit and I lost almost all of my supports. So, I’m back several years, but still trying day by day.

Anxious.. Why am I Anxious?

It’s almost 4 am and I don’t know why, but I’m feeling anxious. It just suddenly came on in the last hour or no.. Stomach is in knot, muscles are tense, saliva production is up, feeling nauseous.. So, not a good feeling.

I’ve done nothing to instigate these feelings, have no idea what’s causing it.. I’ve just been here playing a video game on my phone, nothing stressful.

Beyond COVID19, there’s nothing new going on.. Does anyone ever have this happen??