For Science

Everyone who knows me gets that I have a weird love for science and research, especially medical stuff. There’s a reason I have been part of a clinical trial (the HPV vaccine one) and was really happy to be able to get a job in clinical trials. So it wasn’t that surprising that when I went to a talk on someone’s PhD research about suicide and sleep as part of Geek Mental Health Week, I jumped at the chance to see if I could be involved. 

So, for a week, I’m wearing this special watch and I hope that the data I provide will help with this research and not just produce annoying outlier points! 

Obviously, being someone’s research, I’m not going to talk about it too much, but I just want to put out there the idea of people taking part in medical research. It’s important for me to do what I can. I know that I might help someone by taking part in a trial or research, that the data I provide adds to what can be analysed and used to give meaning to a study. Working in trials every day means that I see the data, know where it goes, and have an idea of the importance it has to our sponsors. And the trials have a massive importance to our patients as these drugs are sometimes their last hope. I know a lot of people are pretty dubious about trials, especially the ones run by big pharma but I see all the regulations, all the training, all the paperwork that goes into making sure that the research is ethical, the benefit outweighs the risk, and the safety reporting requirements are very strict. I’ve seen the result of trials, knowing there are people still alive because they accessed drugs long before they were licenced. I benefitted from the vaccine trial by getting both a hep A vaccine (yay placebo) and the HPV vaccine, when I wouldn’t get it due to my age. And this research, although I may not see any personal benefit, I know it will help give people a better insight into sleep and suicidal thoughts/tendencies. Even if it’s not conclusive, hopefully it will help other people think about the topic, and approach it in a different way. 

Whatever you feel, I am happy to do things for science! If it helps just one person, that’s enough for me. 

Poletastic

In the fight to find exercise that I enjoy and can also actually do without being in so much pain I suffer for it too much, a friend suggested going to a a pole fitness class at Polefire.  I know how much she loves it, but I had my doubts; I’m not athletic, I’m not strong, I’m not flexible, and I really didn’t think I’d be able to do any of the moves at all.  That said, I have another friend who does aerial silks even with her knee problems, and Polefire plays metal music and the class description talked about people going at their own pace and wearing what clothes are comfy for you.  There wasn’t a mention of high heels in sight.  So, I went one night, running into one of my other friends there, dressed in a vest and my sparkly roller derby shorts.  I was nervous, a bit scared, and worried I was going to manage to fall over and break something (ever since starting roller derby, I’m a little paranoid).

An hour later, stupidly sweaty, sore, barely able to remember anything I had done in terms of name and technique, I hugged the friend who had suggested it, a huge grin on my face!  Sure, I couldn’t do everything, and had found it really hard work, but my back didn’t hurt, something that a five minute walk is currently doing.  This was a month ago, and I’m still loving it, kind of wishing I had the time to go more than once a week.  I pushed myself to go when I’d been feeling a bit ill and achy, struggled like hell as my arms weren’t working properly, but still, I managed to work towards doing a headstand.  I come out of each session feeling like I have managed something, however small.  I may have the grace of a baby giraffe but it’s helping me to feel like my body isn’t entirely broken, that there are things it can actually still do.  And, genuinely, you work at your own pace.  The class size is small, and the instructors will demonstrate something from its basics up to something that will challenge people if they need that.  Everyone learns at their own rate, everyone has that move they can’t do easily and it’s different for everyone.  The instructors are helpful and encouraging, even though there are times when I feel like I’m being told nice things to make me feel better (shut up brain).  And people in the classes are lovely.  Sure, I’m one of the biggest women there, and one of the older ones, but I am treated the same.  People know my physical issues, something the instructors let me work with, as they are happy to trust me to know my limits.  I also know I can ask for advice if I need it.

So, it’s another hobby that results in bruises (oh so many bruises), and I feel guilty that I need crutches to move around and yet can do this, and feel guilty that I’m struggling so much with work, yet find the energy for this, but there is so little that makes me feel quite so good about myself and gives me such a positive and supportive environment to enjoy myself in.  Plus, maybe one day I will start to have grace a little more like a swan but, for now, my baby giraffe impressions and strange meeps when I do something weird will have to do.  When I can come out smiling, even when I feel like I’ve barely achieved anything, I think that’s a big benefit to my life.

Tough Times

​Warning: long, emotional, probably rambling post, possibly better suited to somewhere private, but I kind of feel the need to explain myself for some reason. Depression, illness, chronic pain etc. I don’t expect comments, sympathy, any kind of interaction, I just need to post.

Right now, I feel broken. I am a shell of myself. My ability to do the things I love is barely existent, including my job. I feel further removed from the people I love and care about. I’m not in a deep, dark pit right now, I’m just flat, in a beige reality, where it’s too tiring to really feel.

So, my list of medical problems goes on. Everything interrelates, making it so much harder to work on fixing any of it. I have depression, anxiety, hypothyroidism, and arthritis in my left hip. I am overweight, exhausted, in pain, tearful, and fed up. My hip is in pain, because of the arthritis, that could get better if I lost weight, but my hip makes it hard to exercise and my thyroid is probably messing with my metabolism. I’m exhausted so I can’t exercise, I can barely function half the time, and exercise, again, is hard. Oh, and this could be my thyroid, my depression or my painkillers causing this. My depression might be my long standing stuff, or is my thyroid making it worse? Or maybe it’s the ridiculous pain getting me down? And so it goes on. I’m fed up. I’m mentally exhausted. I have no idea how to function with all this going on. I have a PIP application form sat next to me, needing to be filled out because I could do with the extra cash to help with the stupid amount of taxis I am getting because I’m either running late because getting up was hard, or I can’t walk the 10 minutes down the road to the bus without my back and hip being in agony, despite the eight 30/500 co-codamols I throw back a day, on top of other painkillers. I’m terrified of losing the job I love because I have just been off sick again, because a simple cold has left me feeling like I’m recovering from major surgery. The people around me who I care about most are all suffering too, in their own complicated ways and I can barely be there to support them, even though I really want to. I can barely do day to day things without my back hurting so much, I cry out. It’s all having a knock on effect.

I barely know who I am. My favourite hobbies are slipping away from me, my favourite people I see less and less, and the people I love are seeing this version of myself where I’m struggling to not just be angry at the life I have right now. I know it could be worse, at least I have this roof over my head, and food to put in my mouth, but my personality is a shell, my quality of life feels like its decreasing day by day. I don’t want to be 31 going on 90.

Size Matters

I have blogged about weight loss, my own weight, fat shaming, and related health stuff before.  I get angry about the media portrayal of larger people and the way fashion dictates what plus size means.  It makes me frustrated when people talk about the subject in specific ways (most recently, a woman saying that a plus size pole fitness group was not the place to talk about size 12* clothes, and that the people who were can’t be plus size because they haven’t experienced the same structural oppression as real plus size women).

I am currently really struggling with my weight.  I’ve got arthritis in my hip and I know the extra weight I’m carrying will be, more than likely, contributing.  It’s not really about the number on the scale, but on how uncomfortable I am with myself.  That, and I have a surgeon who doesn’t even want to discuss my hip properly until I lose weight as I am too high risk to operate on.  I’ve started a new job so I am now working in an office, and have to wear smarter clothes so gone are the days of being able to wear leggings and comfortable, stretchy clothes.  I want to look smart, and I want to feel confident in myself (not easy when I’m not happy with the way I look).  I’ve had to go shopping for new clothes.  My bras needed replacing (don’t even get me started on the premium people pay for having larger than DD cups of their bra), I wanted to get some shirts, if possible, and some smart, tailored trousers.  I’m not made of money so I can’t get made to measure, and I was struggling to go clothes shopping because, well, I hate it.  There are two reasons for this (well, main ones):

  1. People – going shopping is horrible because of people meandering around, unaware of any of their surroundings.
  2. Changing rooms – hot, bad lighting, too small, the shame of handing back all the things you’ve tried on because none of them fit you.

An added reason for this was knowing that a lot of shops stop stocking their range at size 18, even if they sell bigger clothes.  When did I start needing size 20 or size 22 clothes?  Size 18 at a pinch.  Oh, but then I’m still in size 16 at places.  What is this all about?  So, having ordered in a load of clothes to try, I found that there was absolutely no consistency in sizing between different shops, or even between different styles at the same shop.  Or the fit of larger clothes was, well, awful.  Then I’d browse the specific plus size ranges and get depressed pretty quickly because I’m not allowed fitted shirts if I need a size 18, and there is so much shapeless, boring clothing.  I’m pretty happy to wear a lot of black, but I also want to wear things that look good on me, not just hide my body, which, being larger, is obviously hideous to the eye and I might as well wear a giant bin bag as a dress.

So what is this post really about?  I suppose it’s my unhappiness that there is no set standard for clothes sizing in women’s clothing.  I know that fabric has an effect on this, but I should not be able to wear size 16 in one thing from one shop but need a size 22 from somewhere else.  I don’t want to buy clothes from a plus size range that on purposely makes a size 16 bigger so you can feel better, even though a 16 from the “normal” range in the shop won’t go over my head even.  For me, although I don’t enjoy needing a size 20 in things, I want to be able to pick up a 20 in other clothes and other shops and be fairly sure it will fit, at least size wise, even if it isn’t flattering.  Then there are the other issues of design, something that I know massively effects my roller derby friends.  Jeans seem to think that you have no thighs until you hit size 16.  I also remember the time when the bottoms of a pair of capri jeans were the same diameter in a size 14 and a size 20.  Because calves never get any thicker when your waist does.  And I want changing rooms to stop being a massively depressing place for me.  Stop being too warm, too small, with the most unflattering lighting.  The huge mirrors in there don’t exactly make me feel great as it is.

Sod it.  Maybe I should find some one size fits most adjustable outfit of some type that I can tweak when I get larger or smaller.  Get it in 7 different colours and then just forget about this whole nightmare that is buying clothes.

* US size 12, before you say size 12 isn’t plus size

Semicolon

TW: depression, suicide

So, my boyfriend gave me a random gift today, of an Ikea notebook. He knows how I feel about stationary anyway, but this was particularly poignant. 

You see, the notebook has a semicolon on the front, something that a lot of people will understand if they’ve heard of the Semicolon Project. Essentially, it’s about how a semicolon can represent surviving mental health problems, especially depression, as the story of your life is continuing, not ending. I have a semicolon tattoo because of how important this is to me. To be given the notebook this week is an especially big deal as this week has been more than a little hard. 

On Wednesday night, I had a breakdown. It started with my girlfriend just trying to give me advice, turning into a huge  argument, and then a plummet into darkness for me. The thing is, my hip pain got on top of me. This is the 4th time I’ve felt like my life has to be put on hold because of physical restrictions. I’m sick of fighting. I don’t feel strong, I don’t feel capable, and, on Wednesday, I was ready to give up entirely. A scary thing for me as suicidal is something I don’t get, and I’ve also been so well up until now. 

I’ve taken some time off. I feel bad, as I love my new job, but I also know that the second I try to think, I have hundreds of thoughts running around at once and I can bearly get them written down in time to remember them. I feel guilty, as there is so much to do. I’m scared as I’m on a temporary contract. I’m scared because this job is important to me. I took the time off this weekend too. I was meant to be NSOing, including heading up a crew on Sunday. Now I’m a flake, someone who drops out, who gives up. I’ve let people down. 

I’m waiting to see if Crisis Point gets a bed. I don’t know if I should wait really, but I need help. My brain doesn’t behave anymore. 

Orthopedically Impaired

My body isn’t kind to me. Knee problems, broken ankles, messed up brain chemistry, deformed hip, broken toe…silly things I’ve struggled through and still have to deal with at times, but I did feel I was coming out the other side with most of it. My ankle barely causes me problems, my head is pretty good most of the time, and I had my dysplasia corrected. I’m 31, my body has given me enough crap so I thought I was due some time off. Apparently not.

So, the back story is that when I was non weight bearing for so long, I started to get the odd twinge in my hip. It wasn’t too major, and just meant I was aching after a long day, and my back would hurt. I did some physio exercises and it got a better for a while. I was still working on getting back to how I was pre-break, and trying to get my stamina and stuff back up. I tried to skate again, and do more walking, but I was getting pain in my lower back. I saw another physio, who did some acupuncture, gave me a bunch of exercises, and things eased up for a little while. Still, I didn’t feel quite right so saw my osteopath friend. On her suggestion, I got my GP to request an x-ray, just to check.

Fast forward a few months, in which I moved house, got a new job, and added to my relationships, and I finally got the x-ray done. Eventually, I sorted out an appointment to get the results too. I thought there would be the usual normal enough result and didn’t think much about it. Yeah, I wish. Apparently, I have moderate to severe degenerative changes in my hip joint, in keeping with osteoarthritis. I’m 31! This should not be a thing! So referrals for me, and lots of painkillers. And changes to my life so I learn to manage it better. Until I see specialists, I don’t know if they will be able to do much to help right now.  Even if they can, I don’t know what this means for various things in the future. I’ve been missing skating, lindy hop, long walks and hiking, but they seem so out of reach for me right now. Who knows what I’ll have to give up.

Funnily enough, my head is taking a mental beating too, but I’m trying to remind myself that being sad, shocked, angry, a bit useless is all OK right now, as long as I look after myself too. That, and remember to do my best to manage my pain as I am a particularly grumpy person when I’m in pain.

I will get through this. I am strong.

Web of Love

Poly Means Many: There are many aspects of polyamory.  Each month, the PMM bloggers will write about their views on one of them.  Links to all posts will be found at www.polymeansmany.com from tomorrow.  This month, our topic is “hierarchy”

Over the year, I’ve had several different poly setups due to the relationships I’ve been in.  Being in a long term romantic relationship, which led to marriage, meant that I had things to consider, including how I felt about hierarchy in poly.

I suppose I can talk about what I think hierarchy means.  It refers to giving some kind of priority order to partners.  It’s an interesting concept and I’m still not sure how I feel about it.  I think it’s something that I do without a level of formality to it.  For me, when I love people, I love them.  It is hard to put people in a hierarchy at that point.  Well, it is for me.

When I was married to B and also dating S, I really didn’t want there to be a hierarchy.  The trouble was, I lived with B, I owned a house with him, had a cat at home and a long history too.  It meant that I had responsibilities but also wanted them with S.  People would assume that B always took priority because of our legal status.  I lost one of my closest friends over that.  It was hard.  In the end, this lack of hierarchy but inability to change the one that seemed to have formed became a sticking point in my relationships.  I slowly realised that the reason it didn’t change was that I wanted something different.  What I’d wanted when I’d first gotten married and bought a house had changed and I had changed.  It was less to do with hierarchy but my eventual realisation that I don’t want traditional life setups.  I don’t want to life with other people; I just don’t live well with them.  I don’t like the level of compromise it takes, the sharing of space constantly or even the sharing of responsibilities.  If the dishes aren’t done, it’s my fault.  If I have no clean knickers, entirely my problem.  If the cat hasn’t got any food left, my responsibility to go out and get some.  It doesn’t mean that I never want to help my partners or have them help me out domestically, or that I don’t want to share everyday burdens and stress, I just don’t expect the help.

I suppose I should get back on track with hierarchy for me.  I don’t spell it out as such but I suppose that I do have primaries and and secondaries.  I don’t really see hierarchy, more my core triad relationship with E and the Girl and then the other people I play with or date as a pretty complicated web.  I suppose there is some level of prioritisation to people there but I like to that I can manage people’s expectations of me and make my own ones clear, as well as my limitations.  As usual, the key is communication.  I’m not always great at it and I know I’m far from perfect at poly and relationships but I do try my hardest and also hold my hands up and admit when I’ve messed up.  I still need to learn to say no to things though!

A Developing Hobby

Last summer, I was wandering around a camera shop as E was playing with some toy on demo (the Hasselblad CFV-50c digital back, to be precise).  I’ve been thinking of getting a DSLR for a long time, but never had the money.  E had been teaching me how to use his Canon 5D and it had sparked my interest again.  So, I glanced in the second hand cabinets, thinking that I could get an idea of what a body would cost me when I had some spare cash.  Sat there was a Canon 20D for £20!  Bargain!  It also came with 2 batteries and a charger.  No lens but E had a quick look over it and decided with was worth it, plus he was happy to lend me his little used nifty fifty.  Actually, he bought it and basically told me that I could only use the 50mm lens for a while, forcing me to get used to actually moving to get the shot I wanted.

I’ve not got out and taken photos anywhere near as much as I wanted, what with a broken leg!  But, on Monday, I took the camera out on my first non-double crutch walk and then went to Hull to assist on a photoshoot.  I have the bug back!  I want to take photos all the time, and the weather is making that a more feasible option.  Just, now, I’m planning on spending too much money on my own lenses!  I have so much to learn and so many different types of photography I want to try, to see what I enjoy most, what have an eye for.  So, this is mainly a photo post, with a few of my favourites!

Being Broken Isn’t Always Bad

For those of you who don’t know, I broke my leg and dislocated my ankle my first week of fresh meat roller derby training, back in November. It would have been easy for me to have quit derby then and there, not really knowing anyone that well and having a pretty bad experience. I just couldn’t though. From the minute I broke, people were getting to know me. They cared, they were concerned and it didn’t stop when I left training in the ambulance (clapped out by many). I was added to the broken skaters support group on FB quickly and spent plenty of my hospital stay chatting on FB to various people, including our skater reps and other lovelies who hadn’t even met me that first week. I was already talking to one of our refs about doing some NSOing* at scrims when I was barely out of surgery. I had somehow caught the bug, even with a broken leg!

It did take me until January to feel up to going along to a scrimmage, watching the skating and actually doing something. Score tracking felt awesome. I could be involved and make myself helpful. It sucked a little as I couldn’t really get to know the other NSOs that easily and I flinched every time I saw someone fall but it was fun. So I’ve been doing that ever since, finally getting to NSO at a league game this weekend just gone.  That was a proud moment and our All-Stars won too (I was impartial, honest).  It’s got easier to watch people falling so that now, I’m only getting a little stressed out when someone actually needs on track medical attention. I’m getting to know my leagues officials, have a laugh with them and still do a job, one that I have been complimented on and that’s something that has helped me through the last few months.

So, I got some awesome news this week.  My consultant has told me that I am healing well, that there is bone growth visible now and my ankle is still stable.  No more goth boot and no more crutches in the next few weeks.  He’s so happy with the result that he want’s to use my case in his teaching.  As the second surgery had a pretty low change of success, I don’t blame him.  I’m super excited myself and grinning like a loon!  I can wear matching shoes.  Plus, soon I’ll be able to do more than score tracking! I may even be able to get back on my skates sometime. My consultant has made it clear that it’s not going to be an easy 18 months or so but that’s fine by me. It gives me time to get stuck into a role that I didn’t remotely expect, and would have quite probably not even done had I not broken. At the weekend, our head ref asked me to take on the role of head NSO for the league. MRD have never had one but we’re getting big and for some reason, they picked me. I’m so chuffed, so excited and so proud to be an even bigger part of my league now.  The rule about having to pass minimum skills to reserve my name and number has been bypassed too so I am formally Sara Tonin, #192😀

I’ve posted this as a positive thing that can come out of breaking. But it’s not just this; I’ve made so many new friends as it’s harder to hide in my introvert shell when people ask about my broken leg. I know I would have had the chance to get to know these people anyway but who knows when.  Even if I don’t get back on to skates, or I choose to only ref, I have a new family to be part of and that is something pretty damn awesome.

* Non-skating official