Chronic Illness and Reliability

I’m not reliable. I’m not present.

I have a chronic illness and have been very very sick in increasing ways the past two years. Last Spring, I was diagnosed with one rare disease, Ehlers-Danlos Syndrome, which is all about joint issues and chronic pain. I have had a chronic cough for 9 months now and it has led to an ER trip and most recently 2 horrible weeks off work due to illness. Doctors are still unsure what to make of this cough as tests keep coming back negative but I keep getting worse and worse and medication is not able to manage the issue. One more attack like last week will land me in the ER and on short term or even long term disability. A person cannot function with a cough that bad along with EDS. I literally dislocate from coughing. I also am at risk of a lot of complications from this cough that are potentially and additionally life threatening.

I’m not reliable because my illnesses are changeable. I could be well one day and unwell the next. Or, as has been the case more these days, unwell one day, but really really unwell the next.

You gain a new normal with this sort of issue. My 100% energy level is probably about 50% for you. My 10 on the pain scale is probably 20 for you. Probably as a result of this, I haven’t gone to the ER when I should. Chronic illness really changes your perspective on things. My reasoning last week was that I *could* walk to the bathroom so I must not be that bad, but in reality, I should have gone to the ER and any other person would have, because they struggled to get to the bathroom. Chronic illness also makes you feel like a bother to doctors as they struggle to diagnose your issues. You can also develop a fear of doctors, because they often treat you as if you are making up symptoms or must not be doing something correctly or are lying or exaggerating your symptoms. Often I get dismissed because of my weight and shamed into not taking my health seriously. Often I get dismissed by specialists because I don’t go into the ER and I make it to my appointments. It’s always always always a Catch 22 experience with chronic illness. Always.

I’m not reliable. I cannot be counted upon. Not in the ways that society defines Reliability and presence are so wrapped up in each other. If you are present at an event that you said you would show up at, you are reliable. I’ve struggled these days with even saying “yes” to anything, including events at my own home. I push for energy on good days. I push through pain and respiratory issues.

My “yes” has changed to “maybe.” Which is a “no” to so many people. An unreliable person. A person who isn’t present.

I deal with a lot of guilt on a daily basis because of this issue. I don’t feel like a present member of my community. I can’t participate in person. Events that have an online aspect rock my world because I know I can do them. I can take part from my home and not have to worry as much, because I can log into the laptop or on my smart phone. But if it includes talking or being present on camera, my enthusiasm differs. I don’t know if my cough will make it difficult to speak or not.

I don’t feel like a good blogger. My concept of good blogging used to be every couple of weeks at least with every week at best. But even with a selfie stick and indoor picture or mirror pictures, just taking pictures in the outfits I make is a lot of work for me these days. I haven’t been here for a month because my energy went toward planning and throwing a birthday party for my husband and then being horribly sick the past few weeks afterwards. I have made things. Several things actually, but I don’t have the energy to share except for a picture on IG here and there.

I don’t feel like a good pattern tester. I have had to drop out due to sickness. I’ve also informed the pattern designers that I tested fit and didn’t have time to thoroughly look over the instructions, but did follow them. I usually try to read through them several times.

I don’t feel like a good friend or a good family member. I miss shows. I miss birthday events. I miss occasions, like baby showers. I send mail more frequently these days, though, but sometimes that is slow to come, too. I may not call to wish you happy birthday, but a text message or FB message is what I can do.

I don’t feel like a good wife. I miss my husbands events. I barely see him on stage. I don’t feel as supportive as I wish I could be.

I am reliable. I am present.

It’s different from what most people want or society deems acceptable.

I live mostly online these days. If I like your post on any social platform, it means I am present. I am here. I care about you. I’m using a precious part of my energy to put it out toward you and say, “hey, I care.”

Most people would think that is nothing, but to me that is everything.

I’m available best by email (contact form), IG direct messages, and Facebook.

Sewing for Accessibility

I have Ehlers-Danlos Syndrome. It’s a genetic disorder that means I produce defective collagen. Collagen is in every part of the body including skin, muscles, tendons, and cartilage. As a result of my defective collagen, my joints are hypermobile meaning that they bend back far beyond where they should. Think of an elastic that is stretched out and has lost all its ability to snap back into place. That is what is happening with my joints. They bend backwards because there is very little to keep them in place. As a result, I am prone to injuries like dislocations or subluxations (partial dislocations where the joint “slips” out of place but goes back in on its own). I have cartilage breakdown in my knees and my right hip and frequent dislocations in my left shoulder and right hip. Subluxations are everywhere, including really weird places like my fingers, ribs, and toes. I am always in pain. EDS sufferers generally invent a new pain scale so my 5 is probably more like a 15/10 on the pain scale and I never experience less than a 5 on my pain scale.

I was recently diagnosed this year, but have lived with it my whole life and started gaining weight around 12 years old as my injuries got worse and the pain associated with EDS got more difficult. I fought for my diagnosis in a medical world that looked at my body weight and decided the reason for all of it was because of that instead of seeing that as a symptom of a much bigger issue.

This past year, I’ve come to realize how big a part my sewing is playing in my life in terms of making fashion more accessible to me. I can, for instance, change a dress pattern to have a right side zipper because of my left shoulder difficulties. Instead of sewing woven clothes with sleeves that are hard for my shoulder to navigate in a dress without stretch, I can sew a sleeveless dress and a coordinating cardigan or blazer. I can sew fuller sleeves with fun elements like gathering at the top as well to make sure the fit isn’t too tight to prevent my arm from getting out of the blazer or cardigan. Recently, I’ve been having a lot of trouble closing bras in the back and need to make changes to my pattern to accommodate a front closure.

In RTW, accessible clothing in my size is often not fashionable and not made in fabrics I would wear. It’s overly large and shapeless. The shoes I buy are often incredibly ugly (I keep pretty shoes for photoshoots and immediately take them off after the pictures!). I need comfort and functionality before fashion and don’t have the spare cash to buy the premium fashionable shoes that are also comfortable. Front closure bras are often made in RTW without wires in my size or they are nursing bras. Options in that respect are next to impossible to find for my size. Going without a bra is also not an option since I find that places too much strain on my back.

Sewing truly does increase my accessibility to the retro inspired fashion I love. I create the fashion for myself and make changes based on what I need. As I get braces to help my limbs stay in place, that will also evolve my sewing and create interesting details in my garments. If I end up needing a wheelchair, I will be able to make clothes with that in mind. In that case, too, I might be able to wear prettier shoes since I am sitting down. 😉

I’m really grateful lately that sewing hasn’t been impeded by my disability, except in terms of energy, but I am trying really hard to not push myself when I am low on energy. Sewing is a lot easier for me than most activities. Except for cutting out patterns, I don’t find it overly physically taxing. I will need to get an adjustable desk for cutting eventually to help me with that plus a real ironing board instead of the desk top one I have so I don’t have to bend over unnecessarily. I tend to cut out patterns all at once and then take the rest of the day off.

As I move reluctantly into fall sewing, I will be choosing patterns with more care due to mobility issues. My mobility issues for the most part will not get better. Once joints begin dislocating there is little that can be done to prevent it entirely. Physiotherapy will help a great deal but some things will lead to surgery or further disability. I’ll share with you my bra refashioning woes. I am not looking forward to the changes I will need to make to my bra pattern for a front closure! Mobility is something that affects my life very deeply and the issues I encounter are so different than an able person. I think very carefully before I do anything and have to consider my energy and pain levels. I’ve been hearing from a lot of other spoonies or people with mobility issues and I think it would be helpful to discuss why I choose certain patterns or how I change certain patterns to adapt to my mobility. Each body is different but sometimes my particular issues match with another person who sews. I’m reluctant to put up a post about wardrobe planning (I never follow my plan!), but this is the type of wardrobe planning I can get behind. In that sense, I will have some planning posts and construction changes and what I have done starting with the front closure for my bra pattern.

Diagnosis

Let’s start off with something happy. My garden is flourishing:

Today's scenes from my garden. Lovely flowers blooming. #gardening #flowers

A post shared by Andie W. (@sewprettyinpink) on

I got more flowers and the back planter is fixed, but not yet rid of the rogue tree in the planter. Once the tree is gone, I can dig out the roots and finally refill the planter. I think some more hostas and a shade-loving flowering bush or two would be awesome.

On to the not-so-happy…

I’ve been pretty transparent about my health issues on this blog and I wanted to update since I finally got diagnosed. I have ehlers-danlos syndrome hypermobility type. It’s a connective tissue disorder that presents with hypermobile joints, chronic pain, thin skin, (cigarette paper) widened thin skinned scars, frequent bruising, and poor wound healing. My connective tissue which keeps my joints in place sucks and doesn’t help keep my joints in place at all. This explains my frequent subluxations/dislocations (subluxation is where the joint goes back in on its own and dislocation is where you need to push it or pop it back into joint) and chronic pain, but no signs of arthritis or joint swelling. EDS is often misdiagnosed as fibromyalgia, but can also come with a diagnosis of fibromyalgia. My pain is from hyperextension of my joints and damage to the soft tissues, but ultimately doesn’t affect the bones except as a result of injuries from dislocations. The injuries can lead to arthritis, but EDS itself doesn’t cause it. I’m glad to finally have a diagnosis and have a plan for treatment. I may also have other associated disorders, but those diagnoses will come later.

I have to work with a Physical Therapist to build up my muscles to give more support to my limbs. Some of my joints need braces and splints in the meantime to at least give me more confidence while walking. I walk slowly because I’ve had my knees give out so often. I used to be a fast walker. While I currently walk 6-10km per weekday, it’s not really doing much when I can’t build up the cardio aspect by walking faster. It will be a tough road and I will have more injuries along it. I know the injuries are just part of EDS and I can work on more preventative measures, but there will be injuries.

At least now I know the words and doctors can stop telling me it’s in my head and that I just need to lose weight and all my issues will disappear! Oh, the magic of weight loss… GPs love telling people weight is the issue and not a symptom of bigger problems. It’s tough to loss weight when exercise literally dislocates your joints… 5ish years ago I was 60lbs lighter than now. I was walking 10-15km per day and doing an hour of cardio and yoga per day. I was supposed to be in the best shape ever and on the road to even better shape with a lighter weight, but it was really the start of all these problems. My hip started dislocating and then various other issues arose along with another major knee injury (I’ve injured one or both of my knees several times throughout my life). My quality of life since has gone down significantly and I’ve gained back 60lbs. Luckily, my diet is pretty balanced so I’ve stopped gaining weight and have found that the summer has helped increase my activity for me to lose a couple of pounds. I’m sure that the increased weight has contributed to my increased pain and joint dislocations, but I haven’t had proper medical care until this past year to support me in any weight loss. Now I have a different GP and a diagnosis, I know what I can do to help myself. Weight loss won’t be my focus at all, but it might be a result of all the work I need to do. Weight loss is the furthest thing in my brain right now. I’m not going to beat myself up for not losing anything like I would have years ago, but I will be upset if I don’t build muscle mass and start feeling better. I shouldn’t be pushing myself with high-impact workouts or cardio. I need physical therapy, aquafit, and some weight training with a PT that understands EDS. I need to stop the decline now before it gets worse.

You’ll see swimsuit sewing popping up in the next while. I’m joining a YMCA with a warmish pool very close to my house and am going to need a bunch of suits. Swimming really is the best exercise for me and luckily I am part mermaid. When I was younger, I spent hours in the water if my parents let me. I will have to start out small and work up to a daily regiment. I have to be very careful to not injure myself (which can even happen in the water because that’s how bendy my joints are…) and work closely with a PT on every exercise.

Part of me is really relieved about the diagnosis, because it’s a name finally and actually matches up with all of my symptoms including GI issues. Many specialists told me that I would likely be diagnosed with it so I was prepared for it in one way, but the other part of me is scared and worried about the risk of injury as the reality of EDS sets in. It doesn’t ever go away. I know braces/splints and building muscles will help build confidence for the movement my body needs, but it’s a scary diagnosis and often the extent of the injuries and chronic pain leave people disabled. I already feel like a lot of things are cut off to me and I’ve spent the past two years really cutting back on my social life, because I just can’t do what I used to be able to do. I can barely hold groceries or pick up a laundry basket without feeling a joint dislocate/sublux. Even putting on a bra can sometimes lead to a subluxation of a rib or my shoulder or even my thumb. My chronic pain keeps me up at night, makes me exhausted early, and even makes sitting out the couch difficult since my right hip is prone to subluxation in any position. Even sewing can be difficult. The positive thing is that it won’t get worse as I age. It gets worse with injury and complications associated with that. Working on injury prevention and muscle tissue will help more than anything else.

I still have a lot more to learn, but at least I have something to research instead of a bunch of symptoms. I’m grateful that I finally found a team of medical professionals that can help me. Mostly I am grateful for my husband. He takes care of me and is my biggest patient advocate. He carries the groceries and takes the laundry baskets down two flights to our laundry room. He makes sure I rest when I need it and reminds me to stop. As we approach our first year anniversary of marriage, I’m more grateful than ever that he is in my life. He’s truly a wonderful man. I’m also pretty transparent about my love for him. 😉

I’m trying to keep positive as I juggle the emotions associated with this diagnosis and plan out treatments with the professionals. It’s tough, though, and my sewing mojo has definitely decreased. I’m a bit depressed to be honest. I’ve struggled with it in the past and have felt it as my body declined. I find the plants help, which is why this post started with them. They give me something to focus on for care. I’m a nurturer so I feel better caring for others than focusing on myself. I miss my cat’s comfort for times like these. She would curl up with me in bed and purr like crazy when I felt sad or ill. My husband is a good cuddler and I don’t need to clean a litter box for him. Ha!

I’ve joined some support groups online lately and have found comfort in talking to other zebras:

why-the-zebra

Everything in life takes hard work and I’ve never been one to let that stop me. I’m strong.

My tomorrow will be better than today and not worse than yesterday.