Cognitive Issues with this Project

I have been sewing to some extent, all my life starting with Brownie badges & Barbie clothes.

In Jr high I made a denim pencil case, some board shorts, & a couple of pillows. Growing up I helped Mom with her sewing projects

Over the years I’ve branched out on my own projects. I made myself clothing as some of the plus clothing in the stores just didn’t suit me or were poor quality. I’ve made pants, overalls, capris, dresses, camp ponchos, Halloween costumes, etc.. I even helped my mom make pajamas for my nieces. Then there were covid masks – lots of COVID tri-layered home made covid masks.

I’ve made alterations of different types including simple hems, preplacing elastic waist bands, reinforcing hems, adjusting the fit of dresses, mending of many a dog toy, not to mention tons of buttons & camp & uniform patched &:badges.

So, needless to say, I have had a decent grasp of the concepts with sewing.

Recently, my sister asked me to help her sew slip covers for her outdoor furniture. I agreed before I found out there were 28 cushions to cover.

Now, I know I’ve had cognitive impairments that have impacted my ability to function. Family members have not noticed to what extent this has impacted me, until this project.

Both my Mom and my sister are stunned with the amount of problems I’ve been having. We all agree I am not stupid. I’m quite intelligent but there are so many other ways I’m having issues.

Poor Communication : I think I’ve told someone something that I thought I had. I also have trouble explaining concepts, ideas, solutions in a way that others can understand I will bet I’ve not explained the problems accurately or succinctly enough below to make most people understand issues I encountered. Then solutions to problems (see below) that my sister recommended were the same as mine but just from a different angle but somehow I can not able to explain it. It happened so many times & I was so frustrated with myself that I just let her do what she wanted, sometimes even if I knew it was wrong and I couldn’t explain why.

Ability to Remember / Relearn : I should know basic sewing skills like how to thread a bobbin, which way to sew a hem, how & where to place a seam, knowing what stitches do certain functions, how hard to pull the material through, how quickly to run the machine. These are all basic skills I had and in some cases have taken up to a week to remember or relearn.

Poor Problem Solving Skills : With sewing from our own pattern, I’ve encountered multiple problems, many due to missing the skills above. I had taken me days to figure out solutions to some of the problems for example, seams. I keep reversing my seems and putting the seem on the incorrect side, putting the rough on the outside instead in the inside resulting in many seams being removed and redone. Another is sewing only the fabric required & not accidentally overlapping other parts of the material – I still did this a week after starting. My sister even said my problem solving skills were so bad that I probably would not even be able to work at a job as basic as McDonald’s.

Inability to make corrections: This goes with the problem solving skills. I had a piece of material with one side of velcro on it. I sewed the piece on correctly. However, I had seen it on incorrectly. I had though I’d put the velcro on the wrong side, so I ripped it off. This made the initial blunder even worse, because after I’d switch the velcro to the top, I was then able to see that I had sewing it correctly to begin with, but had reversed the seam. So I had to remove the piece and the velcro again. I had to replace the velcro to the original correct side and resew the side piece coorectly. I was so frustrated and almost in tears because I never would have made this massive double blunder when I was younger.

Spacial Impairment : First, I have a good background in mathematics including social orientation and had even earned a small scholarship as a result, but my sister never had that as a strength. So, as I mentioned above, we were sewing from our own pattern, nothing pre established. It was based on a YouTube video my sister watched. I’ve had alot of problems understanding the way she has wanted me to sew certain pieces on & how they should work together. The only way we were able to visualize how things should be done was by actually putting the fabric on the cushions. Neither of us could get the orientation in our heads. For my sister, that was fine, but for me, it had been a strength and I felt so useless.

It just upsets me, writing this post, to actually write down how many problems I have, how many intellectual skills I have lost. I’m almost in tears. Frustration? Grief? I don’t know.

So because of how obvious it has become, my mom & sister have both suggested I talk to my doctor about these issues Because I can not explain the issues well, my Mom is coming with me, and I’ve asked my sister to write up her opinion. She actually asked me if she wanted her to write it in a way that won’t hurt my feelings. I know it’s bad, so I told her to be blunt & straight up. I know she has great communication skills, so she will be able to express my problems in a way I can never do.

I asked Wendy to write something up for my doctor & accidentally got the date wrong so this is the quick blurb she wrote for my GP.

"So working memory… able to hold things in head to process them, general memory.. asking questions that u had asked a few minutes before, making same sewing mistake many times e.g side sections.. still sew up past stop line after 8 corners, doesn't occur to you figure problem solve this e.g double pin… you came up with solution but I brought up the idea to problem solve this."

I’m pretty sure the issues are due to fibro because I *have* had assessments done and even several MRIs because of it.

I have blood work which I have done and I’ve scheduled a cognitive and memory test for the 29th of August. I follow up Dr Uju I’m September 6th

Cognative Issues, Test Results

Bloodwork:

Thee tests I had done were all negative, except that my hypothyroidism medication was at too high a level because of my weight loss.. So that’s been reduced

COGNITIVE IMPAIRMENTS TEXTING

The testing, imo was inconclusive. His word memory test was too easy to remember.. Dog. Tree. Ball. They’re related. Dog pees on tree, dog plays with ball. The shape he had me draw was a symmetrical pattern over lapping itself. With my math background that kinda thing is easy & not sure how it impacts my memory

NEXT STEPS:

So the meds are changed with a follow-up in three months.. if there’s no improvement, I’ll explain why I thought the test was inconclusive & request a redo

The Fibromyalgia Letter

The Fibromyalgia Letter
~Author unknown

Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points – places on your body where slight pressure causes pain.

Myofascial Pain Syndrome is a chronic form of muscle pain. The pain of Myofascial Pain Syndrome centers around sensitive points in your muscles called trigger points. The trigger points in your muscles can be painful when touched. And the pain can spread throughout the affected muscle.

I want to talk to you about Fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed. And because of this, judgments are made that may not be correct. So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not only my life but those whom I love as well.

I cannot show you a physically open wound to show how much pain I’m in. If I could you would take one look at that, tell me to sit right down, get me a pillow, offer me something to eat or drink and have that concerned and understanding look on your faces. However with Fibromyalgia, you will hear from many people that they would rather have a broken leg any day than suffer the kind of pain these disorders inflict. To me, a broken leg is even a poor example to compare suffering to these disorders and an insult to those of us with those disorders.
You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You won’t see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can’t see it and do not understand….

You must see with your ears and your heart what your eyes cannot see. You must listen carefully to what I am telling you. What I describe to you may not make much sense to you and may be difficult for you to understand. Sometimes it may seem to you to be a different universe that I discuss. Know that it probably is. You don’t have to fully understand my universe and you cannot possibly. However hear my pain, listen for red flags always of any danger signals where you may need to help with added assistance. I like to call it “sending in the troops.” Anytime I do not seem in touch with reality.
Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die. You will hear many things from me that to you seem as easily resolvable. You may wonder why I make the same “wrong” decisions over and over again. Why haven’t I learned by this time? Why can’t I see the senselessness of my behaviour? I may seem to be getting my life together and them bottom out all over again.
Please understand 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. I may be tired. I may be in pain. I may be sicker than ever. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy.

What is happening here? Am I lazy, stupid, etc? Nope. My physical brain and body is very different than yours. I experience life different than the way you do. I feel different than you do. Most of my “friends” are gone; even members of my own family have abandoned me. I have been accused of “playing games” for another’s sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute because of the burning and pain in my legs or arms and shoulders. The pain can be so intense that I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm. Do I experience mood swings? If I am hurting I may be angry, sad, depressed, or any of the hundred moods in the world. I’ll never know what mood I will wake up with? I may treat you cruelly and say horrible things to you; I may ignore you completely, or cry on your shoulder unstopping when I’m in Fibro Flare. You may wonder what you said or did that made me this way. Well you did nothing it’s the Fibromyalgia and all its underlining factors causing this.

While the most predominant symptoms of fibromyalgia include widespread pain and persistent fatigue, the resulting cognitive impairment of this condition may be its most maddening. Commonly referred to as fibro fog, this symptom is a conglomeration of cognitive challenges. Fibro fog is understood to be a physical symptom of fibromyalgia, not a psychological one. Just as no two individuals experience fibromyalgia in the same way, fibro fog also has a varying range of indications, including: Mental confusion, Fuzzy thinking, Short-term memory loss, Inability to concentrate or pay attention, and Language lapses.

This is why I feel like a child at times. Just the other day I put the eggs I bought at the store in the pantry, on the shelf, instead of in the refrigerator. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to “lose” the keys, only to find them in the freezer. As I try to maintain my dignity the demon assaults me at every turn. I have a physical illness and it isn’t my fault and I didn’t ask for it I don’t want it and I don’t deserve it.

Occuring at the deepest level of the sleep cycle, individuals with fibromyalgia typically lack sufficient restorative sleep. We know that at the deeper levels of sleep, called delta wave sleep, a person’s mind conducts internal housekeeping. During delta wave sleep, newly acquired information is assimilated and integrated into the brain. The inability to get sufficient delta wave sleep impairs the ability to recall information and operate at a normal level of mental efficiency.

Sleep, when it happens or restless and unrestorative

Sleep, when I do get some, it is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.

Just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. There are those who say “but you did that yesterday!” “What is your problem today?” The hurt I experience at those words scars me so deeply that I have let my family and friends down again; and still they don’t understand.

On a brighter side I want you to know that I still have my sense of humour. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I want nothing more than to be a part of your life. I have found that I can be a strong friend in many ways. I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.

All I ask is that you become educated about Fibromyalgia. I am someone in your life that suffers from Fibromyalgia. You may think you know everything there is to know about it, but there is more information out there than you think. It is more complicated then you think, and it is more life changing then you think.

Lend a helping hand. If you want to be helpful to someone with Fibromyalgia, just ask what you can do. Be flexible with invitations and plans that you have made. Understand that sometimes the pain of Fibromyalgia is overwhelming. Be active. Accompany them to a doctor’s appointment and take an active interest in their treatment. You can take notes at the doctor’s office and then review your notes together at home. Don’t take things personally. Some people with Fibromyalgia suffer from sudden mood changes. Try not to take these mood swings personally as they are part of the syndrome.

So you see, you and I are not that much different. I too have hopes, dreams, goals and this demon. Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now.

Thank you for spending your time with me today. I hope we can work through this thing, you and me. Please understand that I am just like you.

So I Need You To Please Understand Me