Monday, 29 August 2016

What is actually wrong with me (a non-sewing post)

I guess we're all all too aware these days of how many scammers there are on the internet, lying about fake illnesses that they have out of some desire to feel special or to get money or something. So, I feel like I should say first and up front that I didn't write this post to scrounge for sympathy or anything else. I've never really tried to hide the fact of my illness on this blog, and obviously (as seen yesterday) I do whine about the impact of my illness quite regularly, but in general I don't want this to become a blog about being sick. Recently, however, I've had a couple of questions about why I am stuck at home/unable to work/talk about being sick so much, and so just out of the knowledge that it's irritating to be cryptic all the time, here is a brief explanation. I imagine most people will just skip the rest of the post, and that's perfectly OK with me.

Over the last few years I've been struggling with an illness that I came to realize I had had for a while. From 2012 -- oddly enough, from right about the same time I took up sewing -- onward it escalated significantly but it wasn't correctly diagnosed until after I ended up in hospital a couple of times in mid-to-late 2013. I bounced around a lot of different specialists until finally I was told that I have a very rare genetic condition of a type known as an auto-inflammatory disease. The type I have (not listed on that website) causes acute pain by causing chronic inflammation of my major internal organs (heart, lungs, liver, stomach). Sadly, I don't respond to the main drug that works for many people in my situation, and I have been trapped in bureaucratic wrangling with the NHS for over eighteen months now trying to access an alternative (expensive) treatment instead, which may or may not help if I should ever be given permission to try it. This situation is of course very frustrating.

In the meantime, I take steroids, which prevents about 90-95% of the inflammation. Like most people I get heavy duty side effects to go along with my heavy duty steroid dose. Over the last two years or so I've mainly learned to ride the line between how much pain I am able to tolerate and how many of the steroid side effects I am able to tolerate. When I have bad weeks, it tends to be because one or other of these (pain or side effects) slipped past the toleration point. In general, I've found the best way to keep myself stable is not to try to do too much. Sadly, "avoiding doing too much" has turned out to include avoiding doing almost everything I previously took for granted about leading a normal life. I am very very fortunate that my family have been able to provide endless emotional, financial and practical support to help get me through this period of my life.

To circle back round to my actual sewing: as I've mentioned before, the biggest effect has been that my life is pretty limited -- I don't leave the house much because too much exertion triggers the inflammation -- and so the range of things I sew is a bit limited. The most aggravating thing about my illness from a sewing perspective is the constant weight fluctuations. Many people gain very significant amounts of weight when they are on steroids at my dose level for as long as I have been on them. I have been fortunate to avoid that, although "fortunate" is a funny way to put it because it's partly because I feel so violently ill most days that I don't even want to look at food. However, my weight has bounced up and down quite a lot, and unfortunately when you gain weight on steroids it all goes on (a) your abdomen ("steroid belly"); (b) your upper back ("buffalo hump") and (c) your face and chin ("moon face" or chipmunk face) and then it STICKS THERE, even if you lose weight again! I can't say any of this makes me happy, especially the chipmunk face thing, but there's nothing I can do so I am just... I don't know, working on cultivating something like a zen attitude about it all?

I guess that's my de facto way of dealing with the whole thing, really. Mostly, I just try to get on with whatever facsimile of my life I can have right now. Sewing has been a great plus in my life. When I am well enough to be up and about around my house, it gives me something to do. I'm able to buy almost everything I need on the internet, so the fact that I can't go out to the shops doesn't really matter. When I am less well, it's something think about in the many empty hours that I would otherwise spend staring at the walls. From the outside, I can see it probably looks a little obsessive at times, but in the grand scheme of things I'd rather have a few strangers on the internet think I'm, for example, weirdly over-invested in wardrobe planning than give up on a major source of amusement.

18 comments:

  1. I completely understand your pain, I was diagnosed with Fibromyalgia and chronic fatigue syndrome at 34 I am 40 now and struggle every day to live a normal life. We have to do what we can do get through the day. I admire your honesty and hope that you get what you need to make life easier for you, enjoy the things you can and take rest when you need it.

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    1. I'm sorry to hear you're ill as well! Take care of yourself!

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  2. I really like reading your wardrobe planning posts! Even though that level of organization/reflection on the topic isn't something I'm interested in for myself, I think it's fascinating to read such an intelligent, purposeful reflection on the subject. Especially since so much discussion of wardrobe planning seems committed without question to the idea that minimalism is the right choice for everyone, it's good to see that considered more fully.

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    1. Thank you! I have to admit, I probably would never have become so detailed/obsessive about my data gathering if I had been leading a more normal life with more distractions. As it is though, it's another little thing I use to keep my mind occupied.

      I definitely agree with you about disliking that wardrobe planning = necessarily minimalist formula. I definitely don't think it's necessary to be a minimalist. I have a friend with a huge wardrobe who also does a lot of careful, planned shopping/sewing, and she is totally happy to own five black blazers because she's carefully selected different styles, lengths and collars that go best with different outfits. It's not minimalist, but it is very organized and purposeful.

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  3. Sounds terribly frustrating and I hope the NHS comes around for you. I fell ill a few years back with a form of inflammatory arthritis that seemed to appear from nowhere and made me incredibly fatigued. After losing 18kg, having my mobility extremely compromised, reducing my work to one day a week, and taking a lot of painkillers I was lucky enough to get onto the medication that worked for me. It is unfortunately one of the very expensive biologics, but I'm incredibly fortunate that here it's covered by our NHS equivalent. None of the other meds seemed to work for me at all but the biologics made me feel better within a week of the first injection - I put down my walking stick and haven't needed it since and almost immediately stopped all painkillers. I hope you get a chance to find the meds that work for you - it's terrible to know that they might be there, but to be denied access. Good luck !

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    1. The thing I am waiting on is also a biologic. I am glad to hear it works for you! The feedback tends to be very good from the (very few) people who've tried it, but yeah, the NHS is in such a state that biologics, especially for rare diseases like mine where there is necessarily very scant evidence because of very small numbers of patients, are considered an expensive optional extra. I have everything crossed that I'll eventually get the go ahead, but I am braced for a no.

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  4. My prayers are with you! God bless you!

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  5. I wish you all the luck in finding the right treatment, I also suffer with an illness and sewing has become my sanity. Keep planning, help organising and keep sewing as much as you can, it's an amazing feeling when it all comes together, a sense of achievement is a wonderful thing.

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    1. I agree! It's so nice to have these little sewing successes -- and even failures -- because at least I feel like I am doing SOMETHING.

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  6. I love love love your blog, no matter what you are writing about. I have dealt with complex health issues myself and work at a small US non-profit that provides supports for people with cancer, so I understand how one may not want to share much, if anything, about a serious diagnosis. In the meantime, your musings and efforts in the realm of sewing are instructive and inspiring to me, and I appreciate your excellent humor about the challenges you encounter! (i.e., the pants fitting post). Sometimes creativity is a way of projecting one's self into the future that is yet to come, and there's a lot of good in that. Imagination heals, and the process of making things feeds the soul. I am wishing you luck with the NHS. Thanks for sharing, and I hope things improve.

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    1. Thank you! I am glad you enjoy reading what I write. :D

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  7. Thank you for sharing. I'm chronically ill and I sure can relate! Please keep sewing, keep blogging, keep telling us how you are. Solidarity in healing.

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    1. Solidarity indeed! Chronically ill sewers unite :D

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  8. I am so sorry to hear about your problems! I have enjoyed reading all of your incredibly well-written and very thoughtful wardrobe posts even though I have not commented previously. I feel a bit hesitant in writing this comment because I haven't commented before, and I don't want to seem like I am being preachy or pushy, but I have also had to deal with autoimmune issues impacting my weight, energy, and ability to sew. Funnily enough, I actually found something that helped me in the comments on another sewing blog, and while I realize that what has been helpful to me may not be generally applicable, I also feel like I might as well throw the suggestion out there because at best it will be helpful to someone and at worst you can just ignore it as the ramblings of a crazy internet blogger.

    A few years ago I was feeling generally crappy (won't bore you with details), and I was reading Hungry Zombie Couture (I miss that blog!) and she was discussing the issue of not wanting to sew when you gain weight and your clothes and TNT patterns don't really fit anymore. One of the commenters mentioned "the paleo diet" as a weight loss strategy, and after falling down the rabbit-hole of googling what the heck that was, several months (that have turned into several years) of doing lots of research and experimenting with my diet, I've found that following an auto-immune paleo diet (AIP) has really helped me control inflammation, and I know other people who follow the Wahls Protocol Diet (which is very similar) have also felt better. Obviously, I hope that you will be able to navigate the insanity of bureaucracy and get the treatment that you need, but I also know what it feels like to be stuck with medical treatments that feel like they are doing nothing, and how frustrating that is. I realize it is really challenging to change your diet, and that it probably feels really invasive to have someone sort of push the suggestion on you unexpectedly, but I also feel like it has been a major change that has made a large difference in my quality of life and energy over the past few years, and that if it has the potential to help other people that I should share my experience. Or at the very least pass along whatever internet karma I used in finding that original comment in the first place.

    Anyway, I hope you are not offended by my suggestions. I always feel weird talking about it unsolicited, but I also feel like the diet changes have been really helpful in managing my autoimmune conditions and wanted to share in case it could be of use to you. I wish you the best of luck with everything, and I hope that you will feel better so that you will be able to continue sewing and posting and doing the other things you enjoy!

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    1. Thank you, I am glad you enjoy my blog!

      For various reasons, Paleo isn't for me (I have dietary restrictions related to my meds) but I do follow something like the Mediterranean Diet which is also suggested to have anti-inflammatory properties. For me, it only works at the margins but I do find I feel better if I eat a diet high in vegetables and fruit and low in more processed ingredients overall -- not least because there is a known interaction between my meds and salt and processed food tends to be high in sodium.

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  9. I have a lot of friends with really difficult chronic conditions and you have my absolute sympathy and support. People do not understand well enough.
    Also; I nerdily adore your planning posts. I don't get as much sewing time as I'd like, so I spend (time I ought to be marking essays or planning lessons) sketching out sample wardrobes or purchasing too much fabric online. There's probably a phrase for this: replacement activity?! I don't know, but thank you for all the work you share about wardrobe things; I think it's fascinating!

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    1. See, I always believed there had to be people who were as nerdily interested as I am! I am glad that you enjoy it too :D

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