T with ME: 2. Getting Stabbed in the Bum

This is the second in a series of blogs about how testosterone hormone therapy interacts with my ME. In this blog I write about my reactions to my first hormone injections over the last eight months or so.

Ow!

The first injection really set off my leg pain. I’d been considering using a wheelchair before, but this really made a necessity. Even getting from my bed to the bathroom – which in the temporary accommodation I was in at the time was an ensuite – was excruciating. Over the course of the evening the pain spread to my lower back along the length of my leg. This was aggravated by any movement or weight-bearing. I hired a wheelchair the next day.

I have not had such an extreme reaction to later injections, but think this is in large part because I pre-emptively use my wheelchair – no longer hired, but inherited from my mum – in the run-up to and after my injections. I’ve found that avoiding any activity which might irritate the muscle both before and after the injection lessens the increase in pain.

A lot of people have occasional pain or irritation in reaction to depo injections. (These are large injections that are injected into a muscle for slow release.) My reactions, though much less extreme now that I’ve found ways of dealing with them, are consistent. I guess this fits in with the muscle fatigue and heightened pain response I have in any case.

The other common way of administering testosterone hormone therapy is transdermal, through gels which are applied daily. I went for injections because I thought they would be less effort and not give me yet another medication to take with me wherever I go. After my more extreme reactions to my first injections I was considering changing to gel, but now I’ve found ways of minimising and coping with any pain I am happy with my choice of injected administration. Indeed, the pain has been less bad each time; at some point I may experiment with not using my wheelchair to try to work out whether this is my body getting used to the injections or just because of my wheelchair use.

Maybe this sounds quite negative. I just thought that it was perhaps the most obvious interaction of my ME with my hormone therapy. Overall the experiences both more complicated and more positive.

Crucially, since symptoms are exacerbated by psychological as well as physical stress, the psychological benefits of the treatment have had positive effects (though this has probably been less apparent in recent weeks due to psychological stress from other factors such as a dispute with the University).

The most obvious examples to me include a reduction in stress from talking to people face-to-face or – even more so – over the phone; as my voice has got lower I am less frequently gendered as a woman. Knowing this about my voice also means I feel freer in my visual expression, to look more androgynous or fluid, or anything else – to engage in something closer to as much genderfuckery as I like!

This greater freedom to be, a reduction of the feeling that I need to give visual cues is empowering, and feels like another weight off my mind, another stress lessened. These examples are indirect, but have been central to my experience in recent months. And, as noted above, this lessening of psychological stress has been beneficial for my ME.

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Disability History Month 2: Something Closer to Home

I recently returned to my Grandad’s memoirs and made an interesting discovery. The building my GP surgery is in used to be a hospital. I discovered that this – the Bristol Homeopathic Hospital – was one of the hospitals my Grandad stayed in as a child. Having moved to the city my Mum grew up in, and her parents always lived in (and continue to do so, in the case of my Gran), I periodically come to identify in real life landmarks and places I’d heard of years before. But there’s not been a coincidence as strong as this sharing of the Homeopathic hospital. Not yet, anyway. (Incidentally, I’d be interested to know if anyone can tell me where the school he mentions near Old Market is, this being my part of town.)

So, it being Disability History Month, I thought I’d share the chapter in which my Grandad relays his experience of the place. The book it’s taken from is a self-published job. After a stroke which had a big impact on his mobility, Ray moved into a nursing home. To keep himself occupied, he decided to learn to use a laptop, and used it to type up some of his earlier experiences. Once he’d got to a suitable point to end a volume, he bought some nicer-than-usual paper to print it on, and sent it off to be comb bound.

The following extract recalls his experience as a TB patient. He was left with one leg shorter than the other for the rest of his life, which gave him a distinctive gait. Other than that gait, the disability – chronic pain associated with the stress placed on the joints by this difference in leg length – was invisible. One example of it’s impact: he was ineligible for front line deployment in WW2, so was in the homeguard (which in Bristol could actually be pretty active, as they staffed some of the anti-aircraft guns during the Bristol Blitz). The events described here took place in the years 1928-32.

I’m considering posting another section some time next year, as I’m not happy with the idea of posting solely extracts about disability, since it may suggest we should be approached solely or primarily through our disability, so I’d like to have a more integrative approach. Anyway, without further ado, here is an extract from “Ray’s Story”:

Chapter 2. Incarceration

It was not that the roof fell in but that slowly the tiles fell off and the hole grew larger! I began to dawdle and walk slowly and with increasing difficulty and it was clear that something was wrong. There were numerous visits to consultants and hospitals and I remember clearly the final prognosis. I was suffering from tuberculosis in my right leg, probably from drinking contaminated milk and the man in the white coat said that if they were unable to treat it I would be dead by my twelfth birthday. When you are aged six, you are not that worried by what might happen when your twelve and I had no great concern about this statement although I clearly must have been impressed because I can still remember the room and the occasion, I have no idea how the hospital system worked but although there was no way my family could afford to pay it was quickly arranged that I should go into hospital. The day before, my Mum arranged a special treat; we went to the Queens cinema to see Al Johnson in The Singing Fool, which was the first of the talking movies.

I spent the next four years in various hospitals, firstly the General Hospital in Prewett Street backing onto the docks, then after six months I was moved to the Homeopathic Hospital in Cotham and after a further year, I was sent home for three months to build up my strength. Then into the big stuff, with twelve months at Winford and a final year at Frenchay. I will not spend too much time with the clinical details but the treatment for my condition was not well developed. Nowadays they would treat the disease with a course of BCG, in my day, they relied on fresh air, good food and rest. The dilemma was that it would need an operation before I was mended and that if they operated too soon my bones would grow out of shape. Hence, I was obliged to stay four years. My first stop at the general was very lonely and I found that being forced to stay in bed with no other six year olds around was very unpleasant. This was made worse by the continual diet of milk puddings. Never a day passed without at least one dish of Rice, Tapioca or Semolina Pudding and often with Porridge on the same day. If you took your time eating, it got cold and lumpy but no matter you still had to eat it. If you refused, then it came out again at the next meal. I fought this battle for months, but eventually I gave in and now I can eat almost anything. The one saving grace about the General was that it was situated in the Docks, and there was a lot to see and hear from outside. This was different at my next stop. This was the Homeopathic, where the view from the window was of a blank stonewall. I ought at this stage to say something about the regime. Breakfast at 8 o clock generally porridge and bread and margarine, lunch at 12 30 p.m. cooked meat, onevegetable and potatoes followed by a milk pudding and tea at 5 o’clock, generally bread, margarine and jam and a piece of cake. Sunday, one might have a piece of fruitcake. Sunday was the only visiting time when two visitors were allowed, between the hours of 2 and 4, No one under the age of 15 were allowed. The doctor’s daily round was in the morning and it was vitally important that every bed was perfectly tidy for thevisit therefore no toys were permitted in the mornings. Although provided you made sure the print did not dirty the sheets, you were allowed one comic. One happening for which I am forever grateful is that I learnt to read at a very early age. I truly believe that had I not been able to read, I could never have stood the life. All small boys need a hero to copy and I was no exception, but instead of my Dad I used Harry Wharton and Flying Officer Biggles. We will talk about them again. Going back to the hospital organisation, there were the doctors who kept themselves apart and never seemed to acknowledge the existence of the patients, the Matron who ran the hospital routine and in my experience was always a cruel sadistic monster who invariably controlled the cleaning and nursing staff with a rod of iron but had absolutely no thought for the patients. This is my answer to anyone who thinks it would be a good idea to bing back the Matron. Then there were the State Register Nursing Sisters who seemed to be the people who looked after you, and the nurses and assistants who did the work. They nursed you, washed you, fed you, made your bed and as far as I can remember cleaned the ward. During the first two years I was supposed to remain in bed since they wanted my leg to be rested and to grow. So, there was an intricate system of weights and pulleys that allowed a weight to continually stretch my leg, it had a large shield over it which kept the weight of the blankets off, but meant one always had cold feet!

Excepting for the patients who were critically ill, visiting was limited to the two hours, 2 to 4 on Sunday, with a maximum of two visitors and no children. My Mum always came; I cannot recall any occasion during the four years when she let me down. She generally brought a bag of sweets, a chocolate bar, a small toy from Woolworths and two comics, one was the Hotspur with the adventures of Biggles and his continual dog-fights with the Red Baron and the other with the latest about Greyfriars School and how the boys in the Remove (what ever that may be), got the better of Billy Bunter and Mr. Squelch. This was the vital part of the visit and I read these comics from the date on page 1 to the name of the publisher on the last page. Even then, they were valuable currency to be exchanged for other goods. It is not surprising how vital this weekly visit was and for which I am deeply grateful.

After two years, I was sent home for three months. By then my family had moved again. We had what was called a garden flat in a very large house in Clifton, where my Mum was acting as housekeeper in lieu of rent. I did not enjoy being home. The hospital had insisted that I was not to use my leg and insisted that I walked with crutches and that I wore a very high boot on my good leg so that my leg could not touch the ground. This is somewhat like present-day criminals who are allowed home with a tag on a leg so that there is continual control. This was also the first occasion that I was able to have a school lesson since I went to hospital. Arrangements were made for me to be picked up by a special school ambulance and taken to the special school near Old Market. This was quite an unusual experience in two completely separate classes were being conducted in one room. I have read since of a class of this type in the D.H. Lawrence book, The Rainbow where Ursula teaches a third of a class. Anyway, there were between thirty and forty of us and we were split into two groups, those on the left being under the age of nine and those over on the right. There were two teachers each with their own blackboard and they both spoke simultaneously to their own side. A most confusing day developed, made even worse by the lessons being pitched at the most backward of the pupils. Mostly it was a case of copying off your blackboard and doing the appropriate sum. I do remember doing the work from both the left and right boards, so without any effective schooling I appeared to be picking up a modicum of experience. Three months soon passes and now on to the big stuff.

My new home was the Orthopaedic Hospital at Winford in the care of a Mr Parry, the surgeon. This was a modern hospital with about eight separate wards out in the country. Years later when Geoff had his accident we had to take him there and I remember when we entered the ward and the sight and smell came back to me, I had a moment of utter panic and I wanted to turn and run out. I was put to bed, but now I was anchored to a board. Imagine a padded board that starts at your neck and follows the outline of a shirt taking in the width of your shoulders, narrows slightly at the waist, then splits into two sections at your bum, and then ends just above your knees. Then imagine six metal bars that clamp you onto this board, holding you at your chest, waist and thigh. There is no doubt this was very uncomfortable and demoralising. My way to overcome it was to play a game. I was Biggles and I had been captured and was being tortured, so it was important that I never showed fear and that I was continually seeking to escape. My escape plan included three times a day grasping each of the metal bars and attempting to pull them apart. I was never able to move them, but what it did do was develop my chest and arm muscles and is the reason why I have always been immensely strong. Regardless of my feeling of deprivation, there was now real progress in my treatment. I had my operation and I was declared free of disease. And I could now go on to the final stage of learning to walk.

Before moving on, it might be interesting to mention a couple of points of interest. My chief memory is of the extreme cold of the wards. I mentioned at the beginning that the treatment was mainly fresh air, windows were always wide open and in the winter it often happened that frost or even snow would lie on the beds. The beds were at least six feet apart, which prevented any private conversations. The highlight of the year was Christmas, when the various wards held a competition for the best decorated ward. I remember my ward took the theme Little Miss Muffett and they created a child size Miss Muffett sitting on a large toadstool. They made a huge web out of black cotton, covering one corner of the ward and hanging close to Miss Muffett, a Black spider about nine inches across. This was fine during the daytime, but think what it was like after lights out when the spider was swaying in the breeze. There was also a Christmas tree. A day wsa set aside when the nurses would come around singing Christmas Carols followed by the consultants judging the best decoration and then presents from the tree. It was not like the parties at home but at least it was special.

Then, late in 1931, I moved to Frenchay Sanatorium. After what I had endured during the previous three years, this was a doddle. I was getting better. I was allowed out of bed. There were no encumbrances. I was allowed clothes and shoes. I learnt to walk again. There were still restrictions but I could see a normal life in front of me. I even went to a school each afternoon. Well, it was a sort of school in the hospital grounds. It was a large wooden hut and following the tradition I found in all of the hospitals, there was the maximum exposure to fresh air. In this case. there were no glass windows, just a space with a slight concessionwhen it rained of a blind being available to pull down. I cannor remember being taught anything. The main object was to keep us busy, so they or rather, she, concentrated on craft work. I used to make wicker baskets, trays, and raffia work baskets. I found this very satisfying and I became quite highly skilled. There were frequent sales of our work at the price of the material and my Mum bought two of the workbaskets and used them throughout her life and I believe she still treasured them when they were old and worn out. I even became friendly with the nurses and onje I particularly liked taught me how to made a bed with real hospital corners. Then during 1932 they decided I was cured and my leg was only half an inch short and I could go home.

The following link to a Science Museum page provides a short explanation of the history of TB treatment. The doll pictured at the top, also shown here, is labelled as having been used to explain polio treatment to young patients, but if you click on the link to a more detailed page about it, it says it was used for TB patients too. The shape of the board and straps on this picture are different to those described above, but you get the idea: http://www.sciencemuseum.org.uk/broughttolife/themes/diseases/polio.aspx

Here are some past and present pictures of Hampton House – the Homeopathic Hospital, now the University of Bristol Student Health Service (the GP surgery), UoB Disability Services, UoB Counselling service, and some local NHS services. There seem to be a lot of ante- and postnatal care there, including lots of midwives’ classes.

A photo of a photo one of the receptionists kindly helped me find! If you look closely, you can see some of the patients in their beds have been moved onto the balconies.

A photo of a photo one of the receptionists kindly helped me find! If you look closely, you can see some of the patients in their beds have been moved onto the balconies.

Another historical view across the gardens. Source: https://www.flickr.com/photos/brizzlebornandbred/13084648414/in/photostream/

Another historical view across the gardens. Source: https://www.flickr.com/photos/brizzlebornandbred/13084648414/in/photostream/

The present day entrance to (most of) the building. This is just round the corner from the original entrance. Own photograph, Dec 2014.

The present day entrance to (most of) the building. This is just round the corner from the original entrance. Own photograph, Dec 2014.

Another present day view, through across the stepped levels of the gardens to the building. Own photograph, Dec 2014.

Another present day view, through across the stepped levels of the gardens to the building. Own photograph, Dec 2014.

What remains of the status in the centre of the pond which can be seen in two of the historical photos. Own photograph, Dec 2014.

What remains of the status in the centre of the pond which can be seen in two of the historical photos. Own photograph, Dec 2014.

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T with ME: 1. Preparation

This is the first of what will become a series of blogs about how taking testosterone hormone therapy interacts with my ME. In this first blog, I cover things I’ve done before I have my first injection, as well as touching on some of the reasoning behind this series.

Firstly, I changed doctors at the GIC. I’ve written previously about the reaction of the first doctor I saw there to my disability. I eventually finished writing my complaint letter, and the clinic was pretty speedy at moving me to see someone else – my second appointment with a (different) doctor was only four days later than it was previously meant to be.

My appointment went better than I hoped. I had expected my new doctor to be passively better about my ME, i.e. not making an issue of it. As it turned out, he’d actively made an effort to find existing literature/case studies about people with ME taking testosterone :D.

He could not find any such literature. This experience matched up with my research (although I suspect he looked in more places than me, as I didn’t search any scholarly/medical archives). Hearing this made me surer of my wish to write this series of blogs, so there will be something out there for anyone else in a similar situation. Maybe there’ll be a formal research write-up too, but it’s early days yet – something for us to consider.

I know other people who take T who have found that it makes them feel more energetic, and they recover from exercise quicker. This is potentially a positive, if I end up being able to do more. I need to be careful though, in case it’s just that I feel more wired, despite having the same (lack of) energy as I have now, pre-T. If that is the case, and I overstep my capabilities, then I risk making myself more ill.

Another effect, and one we’re preparing for in advance, is muscle growth. Again, this may look like a positive, but may, as my muscles are developing, result in even more muscle pain. Hooray!

So, the person I see at the local ME service suggested that I start on a proper pain-management regime, such that I’ve built up therapeutic dosages of various drugs in advance of starting T. In order to have enough weeks to build these up, I had a week with health related appointments 4 days in a row.

Amitryptaline seems to be the go-to drug for ME pain. It also helps with getting better quality sleep. This does mean, though, that I’ve been trying to come off the drug I was previously using to get me to sleep, which has resulted in some pretty frustrating sleepless early hours. No more sugar cravings though. And given that T can also increase appetite, that’s probably a doubly-good thing.

So, even in advance of my first injection, T has triggered changes. And I am now the proud owner of a large 4-pods-per-day pill box.

7 day pill

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Setbacks in Health and Cutbacks in Healthcare Provision

It’s got harder for me to fit blogging in to my weekly regime. When your active hours of the day are already limited, what might seem like a minor further reduction of activity in terms of hours to others becomes pretty major. And that’s what’s happened: I’ve had to reduce my active hours per day once again, from six to five.

And no, that’s not “normal for a student”: I mean active hours, not work hours. These hours have to include my eating, my showering, etc – all the things that lots of people take for granted. They also include any social time I deign myself worthy as having. And I do deign myself worthy of social time, because however few hours I can do things, I deserve a life which is more than work and basic bodily maintenance.

The balance is precarious. I prioritise self-care (and I include a certain level of social contact within this, in some attempt to allay depressive tendencies), but find that the amount of time I require for this care, when combined with unavoidable other time commitments, like finding a place to live, results in weeks on end in which I produce no new work.

If my health has worsened, you ask, why don’t I take some time out of my PhD to build myself back up again?

Believe me, I’ve considered it. I already took one suspension in December and January when my fatigue was considered post-viral, hoping to recover. And with a chronic illness which lasts indefinitely, I have also considered whether pursuing the academic path is appropriate at all and if I’d be better dropping out altogether.

The thing is, if I was to drop out, I would be in no better a situation. In fact, I would probably be in a worse one. Because all my (disability-related) support is based at the university. Based on what I know from other attending these ME service clinics, even when the date of my first appointment with the local – and I’m lucky, because my closest ME service actually is local – service finally arrives, my contact with them, especially any one-on-one support, will be minimal compared to the weekly meetings with a mentor I have thanks to Disabled Students’ Allowance (DSA).

These meetings give me time to voice the frustrations – with my body and with other people – which build up between them, as well as to find practical solutions for any problems arising in a timely manner. Without exaggerating, these meetings are the reason I am still at university, even if you wouldn’t believe it from the amount of work I (don’t) produce. And so it scares me that funds for DSA are being cut. But we should remember that the reason I’m still in university is that I’m scared of the current situation outside. Other funds available to disabled people such the Independent Living Fund (ILF) are also being stripped away. Sure, I’m not eligible for the ILF, but people in my community are, and it scares me that their survival is being put on the line, and with no alternative being offered.

And we don’t just want a like-for-like alternative. Better, we want a radical expansion of health and social care. Then, on a personal level, my choice to stay at university would be just that: a choice, and not a necessary act simply for self-preservation.

I’m not trying to argue for this purely for my own benefit. But I couldn’t match other people’s efforts at presenting the general arguments with the amount of brain fog and headache I have now, and suspect I won’t have another chance to expand upon it for some time. A friend has written on the matter far more eloquently than I would manage over at http://livingwhiledisabled.wordpress.com/2014/06/08/save-dsa-the-ilf-the-nhs-the-dla-criteria-esa-without-cutting-it-funding-for-social-care-and-all-other-community-support/, for instance.

Setbacks are frustrating. (Househunting is also frustrating.) Screen cap from 1963 film version of Shostakovich's Cheryomushki, directed by Gerbert Rappaport.

Setbacks are frustrating.
(Househunting is also frustrating.)
Screen cap from 1963 film version of Shostakovich’s Cheryomushki, directed by Gerbert Rappaport.

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