Timing Is Everything

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Perhaps it’s the hot weather making me sick, or generally feeling powerless, but I am in a bit of a limbo right now. I’ve worked hard on my proposal and everything surrounding my PhD but I seem no closer to it then I was six months ago. I can’t begin for September, which vexes me but that’s mostly because I am 38 this year and I wanted to be qualified before I was 40 – or not long after. It just feels like the timing if off with everything in my life right now, be it education and career, starting a family, or generally being out and about.

I started volunteering for the MS Society last week only to then get an email to say it’s all postponed until the area supervisor is back (she’s had to take a leave of absence), so bad timing for me there. I’m trying to finish my proposal but with the end of term and my supervisor going to Switzerland for work I’m not getting any further with that. Then of course is the baby issue. I’m still not pregnant, but because I was sick my period missed a month and so I had to delay an important cervical procedure. Delaying that means further delay on trying to conceive.

Of course I am impatient, and I’ll not give up, I’m just feeling frustrated and a little deflated right now. On top of that I’m being snappy because I have come off one of my painkillers and am starting to reduce my tramadol as well. All of this in an effort to conceive since those medications can cause miscarriage and birth defects. So irritable from more pain too. All in all I’m not very fun to be around right now.

Oh, and I gained 2kg because I was in funk after the miscarriage and the move was making it hard to cook and eat properly… fucking A right?

Too Hot for Much of Anything!

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Even though the British public have been thoroughly introduced to summer weather I’ve still been busy with a variety of things – hence a lack of writing. Inevitably I have also been laid low, my symptoms have gone haywire leaving me in bed and watching tv and movies for the most part. When I’ve not been too sick I’ve been getting out and getting shit done though.

Last week I started volunteering, am officially a volunteer now, and that is just the start of this new phase in my life. I figured that being busy meant less time to stress about a certain time-sensitive event.

Also, I’m going to be an aunt for the first time – officially! So by Christmas we’ll have another addition to the family. ūüėÄ

Don’t Let the Bastards Grind You Down

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Pro Choice Vote

The handmaids are always going to be a provocative image whether or not you’ve seen or read A Handmaid’s Tale and could be used for many a subject for a blog. The title of this post could be used for many a subject too, I’ve used the term in relation to bullies, cyberbullying and general feminist discussions. However, this time I want to talk about pro-choice and why votes like repealing the 8th Amendment in Ireland are so important. How pro-choice changes lives in an important and significant manner. Why sex education for children and teenagers is crucial and why women should have ultimate control of their bodies and as much control of their destiny as chance allows.

Explaining my own position will hopefully put things in greater perspective. As a 37 year old white, straight woman living in the UK I am supremely privileged – yet I am still not equal to a white, CIS, UK male. There are some things I want to clarify from the get-go.

  • I support¬†pro-choice not pro-abortion
  • I support education of all options, not press ganging women into one choice using alarming and psychologically distressing pictures and videos.
  • I would never have the abortion procedure but I fight for the right for all women to make that choice and do not judge others choices.

Until a few years ago I would have had an abortion. Even now, as a better educated woman on the procedure itself, I’d have an abortion if my life was in danger. Now my reality is that if life and death did not come into it I’d not abort, but that is my choice and my reasons are my own – though I’ll hint at the reason being linked to how the baby is gotten out, but I’ll not scaremonger by saying more. It’s up to us as parents, carers, teachers and responsible adults to make sure children and teens are educated on all choices. ALL CHOICES.

It horrifies me that any women is put in a room with pro-life literature and forced to read it all before even being allowed near an abortion clinic. Then there are those women throughout the world who are denied anything at all. Not only do we have to¬†pay for our menstrual cycles and have tampons and sanitary towels taxed but so many of us – 50% of the world’s population! – are denied control of our bodies. Everything from pro-lifers shooting patients and nurses outside of clinics to child brides and women dying in labour because they had no other choice than to have the child.

These are decisions ultimately made by men and unfortunately there are women who prop up this culture too by being complicit.

In Ireland a major step was taken, a step for all women in the world. Today we need to build upon that.

“Illegitimi non carborundum…”

“Don’t let the bastards” (men, pro-lifers, governments) “…grind you down.”

Reflection

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We know from various media and psychological studies that young women have a hard time with body image, and though it’s not just limited to young women I am going to focus on this for the purpose of this post.

Recently I’ve had cause to think more about my present body image – the weight loss surgery and trying for a baby just two reasons for this. Nowadays I am more at peace with how I look, but when I was 16 I hated my body. Unfortunately this is not uncommon for girls that age and like many young women there were several reasons for why I felt that way.

  1. Parental Influence – my mother was obsessed with dieting and because I had my “father’s genes” I was likely to be overweight. So she banned various foods from the age of 8 and often told me if she thought I was putting on too much weight. She measured my health only by my weight, even though the doctor told her I had heavy muscle because I did a lot of sport. I would binge eat and throw food up, though I don’t think I had bulimia, it didn’t last for long but it was still a road I went down because of the pressures of diet. Don’t get me wrong, my mum’s dietary options were super healthy, but she missed things out. For instance, bananas were not allowed (something she heard about not being the “healthiest” fruit) so I had to sneak them into my lunch so I had them to eat while I played sport. Bananas were common at half time and during tournaments.
  2. Peer Influence – the people I hung out with were not body shamers but other school kids were as was the media. At school myself and a couple of other girls were called “thunder thighs” and this was just another way of calling a girl fat. Boys and girls used these names. In truth I knew it was because we were developing faster, so had more womanly shapes, but this “fattening” was seen as a bad thing and something to be teased.
  3. Boys Teasing – this was one of the worst things to happen to 14 year old me because I wanted these boys to think I was pretty, not fat. And fat inevitably means you are ugly too – according to the logic of many teenagers. Such teasing happened at home as well, I was the only girl child in the house for a decade so when I was a teen my sisters could barely walk and talk. Thus, my brothers were horrid to me. It wasn’t just body shaming, it was physical abuse too; punching my stomach to see if I “had enough padding” and pushing me to the floor because my ass was such a huge cushion. When they broke the mirror in the bathroom they said it was me, that my fat ugly face broke it. Most of my low self esteem was because of boys. It was constant, at school and at home and it led to very dark days indeed.
  4. Child Abuse – perhaps if the boys at school had known about this they might have been kinder, but from a very young age I had a poor relationship with my body. I didn’t self harm in the traditional way, but I did not take care of myself either. Much of my negative self worth is rooted in my shame and guilt and I punished myself by neglecting myself. It was something only mitigated by a determination to not be defeated. It’s not about “winning”, it’s about survival. Yet, whenever I was teased or bullied it chipped away at an already damaged and fragile self worth. When I reported this bullying to my parents or teachers and was called a “liar” by the boys it only made it worse. As an abused child I’d been told “No one will believe you if you tell…” It’s cruel that those words were only reinforced by society. Girls are often implicitly or explicitly told that their opinion doesn’t matter, that they should be silent and not complain. That men rule the world and we are merely occupants of the same space. This was a lesson I learned at a young age and continued to learn all throughout my teenage years.
  5. Male “attention” – apparently we should be grateful or flattered when guys wolf whistle us, try to pull us into cars, or grope us in public. Being approached for sex in broad daylight is something we should just accept and see as a compliment. And when you don’t respond to car horns or wolf whistles you are teased, or called “frigid”, or should be “grateful” for the attention. So the options are – be abused by being called fat and ugly or be abused by being told how fabulous your tits are and how much men want to fuck you. When you protest at being groped you get accused of being a cock tease and asked, “Why wear that dress if you don’t want to be touched?” I was consenting by wearing clothes that showed a little skin or were tight? That is all kinds of unfair.

When I looked at my reflection in the (broken) mirror as a 16 year old girl I saw a fat and ugly person whom I despised the look of. Now, when I see pictures of that girl I want to tell her how pretty she was and how healthy she looked! I had a wonderfully healthy shape, a very womanly shape as a young teenager. Sadly this was “unfortunate” because it meant I stood out and that men paid me too much attention.

In my late teens I figured that because mum was not there to control me I could get even fatter and uglier. My motivation for this? So that men would stop touching me and approaching me for sex. I thought getting fat would mean they’d stop. I was wrong. Girls are never taught that men have various tastes, and so whatever your look there will always be men who will quite happily abuse you and degrade you.

My body image is not rooted in how others see me – now. It’s not about being what men like to look at, or what they don’t want to see. As a young woman though it was impossible to disentangle those emotions and expectations from the men of the world because men control so much of our lives. We have to pay for being a woman in so many ways. All humans pay for toilet roll but only women have to pay for menstruation. We are expected to dress a certain way, to wear makeup, to style our hair.

Reflecting upon my reflection was prompted by a few things – the bariatric surgery and trying for a child, yes, but also watching “The Keepers” and “13 Reasons Why” on Netflix. By writing this down and posting publicly I just want to add to the conversation and let others know they are not alone.

Long Term

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What do you think about when you hear the words “long term”?

Long Term Relationship? I’ve got a few of those, the most important of which is with Simon, we’ve been together since April 2005. I’m lucky to have such an interesting and strong relationship and the “long term” part never fazed me or frightened me.

Long Term Illness? I’ve got a few of those too! Diabetes I am hoping to put into remission this time next year when I have bariatric surgery which should also normalise my blood pressure. For the Transverse Myelitis I just have to hope it doesn’t get changed to an MS diagnosis. With this “long term” was something I deeply feared and sometimes still do. It’s hard imagining growing old with these illnesses.

Long Term Loan? And yes, you’ve guessed it, I’ve got one of these too! Well, if you count the mobile phone then it’s 2 and if you count student loans then it’s… many more! And I’ll probably be adding a PhD loan to this soon as well and maybe a mortgage in the not too distant future. Who knows?

Long Term Forecast? For the weather, finances, health, we all tend to have these in our lives if only to try and plan our schedules, right?

So, what do you think of when you hear the words, “long term”?

Bypassing in order to be a mum

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After doing the education session yesterday with a dietician I am more convinced than ever that bariatric surgery (specifically the gastric-bypass). I’ve weighed up the pros and cons, thought hard on this for years, especially since the TM, and it is the best way forward for me.

The diet changes are not changes for me, they are what I eat anyway!

The benefits for sure outweigh (yes I am punny!) the negatives. For example, there will be excess skin (keeping fingers crossed for nan’s genetics here for elastic skin!) however I’ll be in remission for diabetes, not have reflux anymore and have normal BP. Though the diabetes remission and BP changes can be done via conventional weight loss the reflux cannot be cured any other way. Also, the skin excess is¬†inevitable no matter how I lose weight. And I am fully aware the NHS won’t likely pay for surgery to get rid of it. That is something I’ll likely save up for. >_>

The fact is this is not just about my weight. In order to conceive and to be a mum in general I need to be lighter and to do IVF in a few years (they won’t offer it now even with a lower BMI because I am fully fertile) I need a BMI of 30 or below. Yes, life will be just fine without a biological kid but I still want to try. After the miscarriage in Feb (the gynecology nurse confirmed that yesterday) I am determined to give this a proper try. I’m not perimenopausal and don’t need a D&C but I am going to have my menstrual cycle “jump-started” next month with progesterone etc.

Though I’ll be on less rice and pasta I’ll still have lentils, chickpeas and quorn! My vegan/veggie diet was the best decision I ever made. It’s a scary prospect, the operation as well as the recovery, but it is worth it. The other thing we are doing is gradually reducing my portion size to that of a child so I am already in that habit for post surgery. ^^

What’s Not Being Said

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One of the symptoms of various chronic illnesses (such as transverse myelitis and multiple sclerosis) that so few feel they can speak about is that of sexual dysfunction. In the beginning it’s unlikely to be the most stressful or pressing symptom since you are still in shock and dealing with so many other symptoms. Sex is lower on the list of priorities – learning how to walk again and dealing with bowel and bladder issues take up most of your energy!

However, once the dust settles and you are learning to handle your diagnosis the sex thing comes back into focus. Whether you just want to masturbate or are trying for a baby with your husband the problem remains the same. Your illness is causing issues with your sex life.

We experience everything from burning sensations in the genital area, not having the strength to move, not being able to get an erection or not experiencing orgasm, plus so many other issues.

How then to even begin to cope with this? In the UK, and I assume in other cultures similar to ours, sex is a subject that is still a taboo. Even amongst the younger generations, sex is not something as openly discussed and where it¬†is discussed it’s not in the context of dysfunction or illness.¬†So, after seeing a need for somewhere for TMers to talk about this stuff I set up a Facebook Support Group: Transverse Myelitis & Sex

I am someone who genuinely has no issues talking about these things, whether it’s from a personal perspective, psychological, physical, erotic, I think it’s important to be open and aware of one’s own sexuality. I just wish I could help more directly, but I’m not a qualified therapist or doctor. So, my aim is to create a safe space to talk and to link people to helpful articles and websites and write blogs on various areas of sex and sexual dysfunction for the chronically ill – specifically for Transverse Myelitis, but others with other demyelinating diseases would certainly benefit from such blogs.

If anyone has any helpful articles or websites feel free to contact me!

Troubled Cycles

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It’s not often that I mention my desire to raise children in my blog, I think sometimes those thoughts feel too intimate to share with the general public. However, I think it’s important to discuss women’s health, and so I’d like to open up for the first time about it.

Be prepared for in-depth descriptions of gynecological stuff.

The Role of Stress

Stress has always been the main thing that affects my menstrual cycles. I started my period when I was 13, used tampons the very first time, and had a cycle that came and went like clockwork for nearly 4 years. Genuinely, every 28 days I had a heavy period every day for 7 days. I had horrendous cramps, every PMT symptom you can think of. Fortunately I had a very understanding mother (she’d had 9 kids by this point) and on my paternal grandmother’s side there was a history of difficult monthlies and pregnancies and birthing. So already I was sort of up against it since I was clearly taking after my nan and my first cousins.

When mum died I was just turning 17 and suddenly my periods stopped. At the time I suspected it might be a result of shock and stress, and this persisted for a year before I saw my GP. They assumed the same, but did nothing except test my hormone levels – all normal. So I continued my life having no period for years. It didn’t bother me since I didn’t have to deal with the pain and fuss of a period and I wasn’t sexually active or wanting kids either.

At around 22-23 my life started to move forward and that moving forward relaxed me immensely. I felt much happier too, and not surprisingly there was a return of my heavy periods. At 24 I met the love of my life and my happiness levels soared.

The Mirena Coil

We had a pregnancy scare early on, and after raising my siblings for the last 7 years I was dead against having my own children so soon into this new relationship. We discussed various kinds of contraception – I’d already been on the pill since we started dating. I found out after the pregnancy scare that my mum had been sick because of the pill and I apparently had the same malaise. In the end as a couple we opted for the Mirena Coil, but not because Simon was refusing to be responsible for all of this. Neither of us were comfortable just using condoms – we’d doubled up on the pill and condoms so we were equally responsible. The fact was that the Mirena would help me with my heavy periods and cramps too so medically it made the most sense. It was weird getting used to, the “threads” of the coil take a few months to move either side of the cervix opening in the vagina so sex was sometimes a little… scratchy for him. It was never painful though (as far as I know at least!) and we were very happy to have no interruptions to sex during the month.

When I was going into my final year of my degree we decided it wouldn’t be the worst thing in the world if I got pregnant, so decided not to have another Mirena put in. However, a month before it was due to come out I got pregnant and had a miscarriage.

TM and a Return to Normality

Between 30 and 32 I had normal periods, again I was relaxed and happy. Then the TM hit, and my body once more went into shock. From 32-36 I had virtually no periods again. In November 2016, after a couple of years of trying for a baby my period finally came back and has been regular ever since. At least, until last February when it became irregular again. Just before we were offered a move I had a miscarriage. Now I say it’s been an irregular period, that’s not exactly accurate. I bled for about 7 days after the miscarriage, then 2 days later bled for another 10 days…though this time it was spotting. Both lots of bleeding had a lot of clotting, the spotting was a lot of brown blood.

After having a relatively normal period in March, I bled mid-cyle, bang in the middle of my ovulation phase. It was¬†so frustrating and I told myself that if I bled between periods again then I was going to the GP, so go to the GP I did. She ended up referring me to a gyno at Liverpool Women’s Hospital and I have an appointment there for the 1st May.

April’s period was 2 days late and even then was brown blood day 1, a little bright red blood day 2 and thus far zilch on day 3. Does that even count as a period, or just a very light one? I am so confused… Thankfully I’m using an app on my phone to track and record all of this so can give the specialist detailed information.

Wish me luck!

To Conceive or Not to Conceive?

Finally, on the note of having and raising children – I fully intend to adopt a 2 year old in the next few years regardless of whether or not I conceive. Being a parent is about raising the child, not being biologically connected. I don’t want to be a professional teacher, perhaps a mentor in some capacity, but I do want to teach a child. Whether male or female I want to raise a person from as early as possible and pass on the things I think are important, as well as making the child happy and balanced. I want to do this with Simon and I want adopt as well as have a child naturally. This is a part of my life plan, I’ve thought about it a great deal, we’ve discussed it as a couple over the years as well. We want to be responsible, loving parents.

So wish us luck, please?

 

Life as a Researcher

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In the weeks since the TM Away Day in Manchester I’ve found myself super busy! The contacts I made there were fantastic, and I gathered the courage to contact my own neurologist (as a researcher not a patient) to ask her for help from the Walton Centre. I want to collaborate and she is one of the head researchers there – it was fate! Anyhoo, she’s been awesome, has given me excellent advice and I am gonna meet with her once my proposal is finalised and before I’ve gotten funding and go to ethics. It is guaranteed that the specialists will be handing out my flyer to TMers and MSers which calls for participants but I might get to work with the patients as well! Fingers crossed!

When I actually begin my Doctorate at LJMU I’ll be doing regular classes but also a few workshops at the beginning so I can teach lectures and do seminars and workshops (mostly with undergrads). Earning while I learn eh? Noice. Also it’s my intention to lecture once I’ve graduated so great experience!

In the meantime I am working hard on beefing up my CV with the following:

  • Published articles (my own with my supervisor and contributing to others in various ways)
  • Research Assistant credits and experience in:
    • Qualitative research (practice for my own research)
    • Neuroscience (closely linked to pain if possible)
    • Literature searches (practice for my dissertation and my systematic review)

Thus far I am working on all but the qualitative stuff, which I have a lead on as well!

It’s fun doing this work even if it is unpaid, it’s all worth it.

Just Like Me

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Last Saturday, the 17th, I met others who’d suffered Transverse Myelitis. It was a huge day for me for many reasons, but not least because it was the first time I’d ever met anyone else with this rare illness. Not only that, I had also been invited to talk about the research I did into TM pain and coping as well as contribute to one of the workshops in the afternoon. It was an amazing experience and I’m so grateful to have been able to be a part of it.

It was nerve racking to talk directly after my own neurologist, Prof Young, but I felt my presentation went okay. Talking to non psychologists is difficult, but then talking and presenting to psychologists is difficult too, the two experiences are simply different. As nervous as I was though it was the good kind of nervous, the kind that has you being aware of every moment, success or failure. ^^

I want to keep in contact with as many people as possible, so I hope they either email me or see this wordpress blog and reply!

Looking forward to joining in with the Manchester support group too!