266/365 – Disability network

Getting involved with different projects at work seems to be my favourite hobby at the moment -last week it was the disability network.

As part of the National Inclusion Week, the group held a planning event for the national Disability Month between November and December. My role in the communications team meant I went along to the meeting to capture the event for our social media campaign. I got sucked in. I couldn’t resist contributing suggestions to the planning event and have come away  with a handful of things to do (as I tend to).

My accidental inclusion in the group made me realise I had never considered joining. When I first joined the department,  I was faced for the first time with the choice of ticking disabled or not. But still I sought out a women’s network and got involved right away when it re-launched. I also joined the LGBTQ group out of curiosity as I had never worked in an organisation that had groups for these things before.  I never considered the disability network. Although I’ve never been a fan of labels, the term ‘disability’ wasn’t something I identified with – I certainly identified less with it than with ‘woman’ and ‘LGBT’. It  seemed to be broader and vaguer to me than ‘woman’ and ‘Gay/lesbian/bi/trans’ which of course it’s not. I think that was me showing unconscious bias there.

Now I’m involved, I’ve got to say I’m excited about it. The group had some brilliant ideas for the month and were warm and welcoming. One of the things they want to push for is a campaign about people being defined by so many other things as well as their disability and that is a concept I clearly agree with. I’ll let you know how it goes. 

265/365 – 100 posts to go

Nearly 10 months after I started blogging every day for a year about living with myasthenia gravis, I have reached another big milestone – 100 posts to go. It’s been a while since I looked at how the blog’s performing and thought about aims with the time I have left, so this seems like a natural point to do so.

 For some reason in the image below my counter is saying I’ve done 263 posts which would make this 264 – I’ll need to check this. I’ve reached 6,145 visitors and the blog has had close to 23,000 views. I’ve had readers from more than 50 countries around the world.

  On average I get more than 20 views from google search everyday and I think if I refined my titles to be more search engine friendly this could jump. The blog posts that tend to do the best are those with strong key words like ‘myasthenia’ and ‘diet’. So that’s one job for me over the next two months.

The reason I set out to write the blog was to provide some information and advice for those who have just been diagnosed, to motivate those that feel they can’t live a normal life with the condition (while understanding that it affects everyone differently) and to raise awareness so that people would talk about myasthenia to people they know. I feel I have done the first two parts, but I still have some work to do on the last aim.

Raising awareness

One of the evaluation courses I did at work explained that raising awareness in itself can’t be an SMART objective as it’s too vague and not really measurable. So in the last 100 days, I’m keen to get the blog out to a wider audience and that’s going to take a bit of work. I’ve got one thing lined up, which I’ll write about separately this week, but I need to do a bit of a PR campaign. 

Setting future direction 

Over the next few months I need to have a clear plan and bloggers lined up for the next stage -more on that soon. If you’d like to get involved in the next stage, drop me an email.

264/365 – Clean up to Christmas

This week, Summer has felt like a distant memory  – it takes a little longer in London – as scarves and winter jackets have been re-appearing for cold mornings and evenings. I’ve been slacking a little with my exercise regime recently and when I hit the gym on Friday lunchtime I had a disappointing rowing time for 1,000m (as pictured above). With no other fitness challenges lined up this year, due to the events season being just about over, I need a plan to keep myself motivated to stay fit between now and Christmas. I want to be in the best shape possible as I continue stepping down the last 2mgs of steroids and then hopefully begin the same process for immunosuppressants. 2016 could be the year I try being medication free, but I’ll need to be strong to do it. That will take a tough exercise schedule but also a healthier diet again.

Exercise plan

I’ve decided to start planning 4 fitness sessions during the working week and my plan is to make at least 2 of them after work to stop me spending money while being unhealthy socialising in the pub. I’ll be spending at least an hour each day keeping my body strong and then if I do exercise at the weekend it can be for fun – like playing tennis or going to a salsa class/club. 

Elaine told me this week that everything the British Rowing Team did in the build up to the 2012 Olympics, they asked themselves ‘will it make the boat go faster?’ I need to apply the same principle over the next few months to choices I make – ‘will it help me come off medication?’. If I start to feel that the exercise is having a negative impact on this question, I’ll re-evaluate.

Diet and lifestyle

While I’ve continued with some parts of the gluten-free, dairy-free and fun-free adapted diet I had at the start of this year, mostly gluten-free and eating soya yoghurt, I’ve slipped up and have been consuming a lot of sugar, caffeine and salt.  

My plan for the next few months is to continue the kind of meals I’ve been eating, as they are mostly healthy, but adapt the way I’ve been snacking. Try to eat popcorn rather than crisps, 70% dark chocolate only and try to cut back my caffeine to one coffee and one tea a day.

I know from before how much better cutting out the unhealthy snacks and gluten made me feel so it’s time to try again. I feel that will help me come off medication. 

Additionally, I’m going to try getting 8 hours sleep every night as that will help my body cope  with the medication reduction.

263/365 – Early mornings and late nights

After a week of early starts for a new work task and late nights due to evening activities, I was feeling exhausted last night. It reminded me of how I regularly felt last year when I had to be in work by 8.30am at the latest and often wouldn’t leave until after 7pm. Those kind of hours start to wear you down and after only a couple of days this week of a similar pattern my eye has been drooping more than it had been recently. 

Today, I’m delighted that I’m working for the Civil Service as on days where I start to feel exhausted and my condition flares, flexible working comes in handy. The body is an amazing machine though – I’ve started later today, allowing myself a full eight hours sleep, and already there is a significant difference both in my energy levels and my eye ptosis. 

With a relaxed weekend planned, I’m hoping to catch up on all the precious sleep I’ve missed this week. Happy Friday everyone!

262/365 – Recovery from thymectomy at home

Following on from the last two blogs about my thymectomy operation and recovering in hospital, I thought I would complete the trilogy. As a reminder, I had the open chest version of this operation to remove my thymus – the gland that during childhood and teenage years helps to build your immune system. This meant I had my breast bone broken so they could get underneath it and then put back together with wire. 

As it’s quite a traumatic experience for the body, the full recovery period is six weeks. Doctors recommend you listen to your body but say it should be at least 3 weeks before you go back to work. Thankfully, I kept my job on part-time and as I worked Thursday/Friday I was able to only take two weeks off and for it to be nearly three weeks before I returned to the office.

So how was recovery for me? Tough at first but actually quite rewarding in the long run. For those that follow the blog you’ll know I’m somewhat of a fitness junkie and the thought of not being able to exercise for six weeks terrified me (and Elaine). What kind of monster would I turn into without getting my fix? In reality though, I struggled to breathe properly for the first few weeks – the effort of walking up a hill exhausted me and I still was struggling for concentration. I had grand plans of doing some writing and lots of reading during the recovery time , but in reality I felt completely wiped by it.

From my first night I decided to try to get back out and about as it would do no good to let myself get scared. My mum, my brother, Elaine and I went to the local cinema to see Proud. While I was nervous about being out and it took me a while to relax, I was able to switch off eventually. I tried to get out for little walks to start with – just around my area – and then built it up gradually. After leaving hospital, I rapidly reduced the painkillers and stopped taking then after four days at home. 
Public transport was a bit of an issue because it is jolty – I didn’t get a bus until the second weekend after my operation and had to make sure I got a seat as standing up holding onto a handle would have been difficult. Particularly as you have to stay rigid. Then I finally got a tube a few days before my first days back at work at a non-peak time to test out how I felt – I clutched my chest the whole way for the first few trips in case anyone bumped me. You just can’t stand even a little bit of pressure in those early days. 
In recovery week three I went to the Globe theatre which meant three hours of standing in the cold. That was a step too far too soon and I got sick as a result. My body wasn’t ready for it. 

Around that time, it may have been partly to cheer myself up, Elaine and I started looking at Camino de Santiago part two. We both needed something to look forward to at that point and looking at the route gave me much needed distraction. It also made me start to think about exercise and getting strong again. 

By the fourth week , I was starting to feel good and was able to enjoy my days off work. I did my first full week back at work on week give and survived, but that was only cover. I was able to read, socialise and walk further and further.

By week six I was ready to get back in the gym, if not a little apprehensive. I built up slowly and it was another couple of weeks before I could chest strength work. I took up bikram yoga to help with the strength and I felt fantastic. If not gone, my symptoms were stabilised. The hospital was a distant memory and the bio oil was day-by-day reducing my scar.

261/365 – Recovery from thymectomy in hospital 

I wrote yesterday about it being a year since my thymectomy and focused on the experience of the operation. Sorry if I scared or upset anyone who is yet to have it – that was my experience and it was a lot  better than I thought it would be. I must say at this point that I think it has made a positive difference as my symptoms are a lot more stable now. I would do it again tomorrow for the chance to be symptom free or have my condition stabilised. 

Today, I want to write about my experiences of recovery – I’m pictured above the night I got out of hospital tucking into a fajita.

I didn’t really wake up on day 2 (Tuesday) as I had barely slept. I was in a lot of pain by then and in the morning I was really struggling to breathe and felt like my lung had collapsed. I was still in intensive care and hitting the morphine, but it didn’t seem to be doing much. Before I was moved from intensive care, I had my first physio session. I still had the drains in at that point – two holes below my breasts that were attached by tube to a container. While it was really uncomfortable, he got me up to walk a little and I tried not to grimace at how fragile I felt. I clutched my rolled up towel to my gaping chest – it would protect me. 

The nurses would come around regularly to take bloods, blood pressure and temperature. I saw members of the surgical team on the first recovery day but can’t remember much of what they said – it was a quick check to see I was alright. I continued to beep and would panic anytime my alarm went off. I never saw my surgeon again. 

In the afternoon, I was moved out of intensive care. Before I could do that they had to remove my drip and the drains. That was quite a painful and freaky experience – I was able to feel two tubes being pulled out from the inside – but it was over in a flash.

I was put in a two person room with a tiny Italian lady, who must have been eighty with tight little grey curls. She hardly spoke a word of English. I’ve never wanted to know how to speak Italian but in those days I would have loved to know the basics. Although it didn’t stop us trying to communicate. Still, I was grateful for the silence in between all the nurse checks, meals, dr visits and medication taking. I didn’t have the concentration to read at that point – or much in the first week at all. I did however start watching Homeland to distract myself from the discomfort – after a few minutes into the first episode I was hooked.

From that point on, I had regular visits from Elaine and my mum and dad separately and they were less fussy about visiting hours. The first visiting hours started at 9.30ish until 12pm and then the evening ones were from 4-8pm. They would help me brush my hair, keep me busy with tales of their adventures around London, my mum would pass on all the family and friend well wishes (which were always lovely to hear) and, in the first few days, Elaine even helped me wash. 

That was my second day of recovery (Wednesday) and probably my worst. I had been given tramadol the night before and it made me feel as sick as a dog. I tossed and turned for the whole night, and when Elaine visited in the morning I had a fever. My gown was damp with sweat, but I still felt too ill to wash myself. She took care of me as I focused on standing up. She also brought the Italian lady in the next bed a cake and I was reminded again how thoughtful and kind she is.

My mum had the genius idea of buying me a neck rest and that was what helped me get my first decent sleep in hospital on my third night. I would thoroughly recommend taking one if, like me, you don’t  normally sleep on your back as after the thymectomy you will be unable to sleep on your side for weeks. I felt like a new woman when I woke after at least six straight hours – I could tell the sleep had pushed me over the worst of it.

My second physio visit was this day, Thursday, and he made me go for a walk with him around the hospital. I wasn’t sure I was ready for it as I struggled to breath going from the toilet back to bed. But we took it slowly and I tried to conceal that I was struggling to breathe as we walked and talked. After that, he dismissed me. I would be ‘grand’, he said. 

I got back into bed exhausted from the effort of a 10 minute walk and couldn’t help worrying about how long it was going to take me to get back to normal. 

My last two days in hospital were really quite peaceful and I would even go as far as to say I was a little disappointed that my break from the routine would end soon. The nurses kept me chatting, my appetite returned with vengeance, my friend Jo came to visit and made me realise how much laughing hurt now. I could hug properly again – despite being tender still – and I took to going for little walks around the hospital occasionally forgetting to do up my gown properly. 

I often remembered not to put weight on my hands just as I was about to – it felt like being stabbed in the chest. I had never fully appreciated how many things I used my chest for. 

The tests continued and I was stable – I was told I would get to go home on Friday morning. The night before my departure I binged on Homeland and then went to sleep to the sound of the woman in the next dorm doing her rosary beads and praying out loud in Italian. Around 1.30am there was screaming in the corridor – feeling protective of my roomate I got up to check. It was a man asking to be let out to go to the shop to get beer – if he is one of my new neighbours I’m glad to be getting out, I thought. 

My dad had gone home by now but my brother arrived just in time for my discharge. I was given a sack of drugs, a list of instructions and a hug by my Italian neighbour. I worried about her for weeks after and meant to go back to visit, but never made it. As my brother carried out my bag full of clothes I hadn’t worn, my mum and Elaine supported me out onto the Marylebone street which I was a little nervous about. Back to the real world meant people buzzing around me and chaos – I hugged my arms tightly around my chest. 

It was over and I was fine. My ptosis was still there so I knew I wasn’t one of those immediately cured types but I hoped for longer term remission. I still do as it can take up to two years. 

260/365 – Carrying suitcases under my eyes

I’ve spent a lovely weekend in Scotland but boy has it been hectic. I probably didn’t need to tell you that as it’s clear I’m exhausted looking at the photo above. Not only is the ptosis playing up, but I’m carrying more luggage under my eyes than in my hand. 

It started with a late train on Friday – the trains between London and Edinburgh seem to be getting more expensive every trip and there’s always a bit of money off if you take the last train before the sleeper at 7.30pm. It arrives at 12.30am so by the time I catch up with the parents it’s the wee small hours of the morning. Then on Saturday, Elaine and I headed through to Glasgow with my girls to get some food and a catch up before attending the lovely Giorgia and Dave’s Scottish wedding party. Sadly I wasn’t great company as I struggled through my gin and felt an overwhelming need to be horizontal. 

Staying in a hostel dorm of 14, with a girl who kept whispering ‘get out’, a snorer and lots of 5am risers, wasn’t the best place to catch up on much needed zzzzs. Elaine and I were up and out by 9.30 – unheard of on a Sunday. The positive was we got lots of exploring time in Glasgow and, after some much needed brunch, I dragged myself around the West End, Botanics, Glasgow University and Kelvingrove Art Gallery before catching the easy- as-pie subway back to get our bus.   

After crashing out on the bus, I felt a bit energised and went to see Everest with my amiga Steph. There was no chance of falling asleep watching that. By the time we got home to have some delicious Sunday dinner cooked by mother dearest, and chilled for a little while, it was already late and bed was calling. 

Most weekends I try to give myself a good rest by having a lie in on at least one day, but this weekend it didn’t happen. To stop myself feeling exhausted for the rest of the week, and lower the risk of picking up any bugs like last week, I’ll try to catch up tonight. 

259/365 – One year anniversary of my thymectomy

365 days ago I woke up reluctantly after a night of tossing and turning. My pyjamas were soaked with sweat and I kept thinking about the letters I hadn’t finished. I was due in the Marlyebone hospital, where I had spent many pre-op hours before, by 8am. As I quickly showered and dressed, my surgeon’s words kept coming back to me ‘you’ll be fine – I do more of these operations than anyone else in the country’.

The day before I had phoned to check whether the thymectomy – an open chest operation where the breast bone is broken and mended with wires to remove the thymus – was going ahead. Of course I hoped it wasn’t, but no such luck. My mum, dad and I had a Sunday roast – my supper of choice – and an attempt at an early night. 

As Elaine and I walked briskly through Oxford Circus – in amongst the commuter chaos – I felt a quiet calm come over me. I had to keep it together – I would be fine. For the last few weeks I had been panicking and had even written letters to my loved ones in case something happened, but I couldn’t bring myself to finish them. 

We arrived and I was told to wait in an empty room – I was eventually weighed, had my height taken and my blood pressure checked to distinguish the amount of anaesthesia I needed. I had to change into my hospital gown, which Elaine had much fun taking the piss out of. I was nervous again and went to look out the window to distract myself. Thankfully, my wonderful woman picked the perfect time to ask me for a dance. 

My mum and dad arrived from their hotel and we chatted for what seemed like forever – still no update from the medical staff. As I wasn’t allowed to eat after midnight, I was starting to tire and lay down. Eventually the waiting in a stuffy, natural light deprived, room got too much for my dad and he went out for a walk. Of course not long after I got the nod – I was put in a wheelie bed and wheeled to the lift. It was around 2.30pm. 

A few floors down Elaine and my mum had to say goodbye – they smiled and we said ‘see you soon’ refusing to acknowledge it could go any other way. As the doors shut behind them and my escort, my legs started to shake uncontrollably. 

The freezing basement – the anaesthetist – talking talking. Darkness.

I’ve been asked whether I knew time had passed when I woke up – I felt like I had been asleep for weeks. Then there were flashes of lights and I remember straining to see a clock. I couldn’t figure out what was going on and there was so much beeping. Then my parents were above me – I can’t remember a word of what they said but I’ve never been more glad to see those faces. The time they were could have been 10 seconds or 20 minutes, but after they left Elaine came in and she smiled. I was out of it still but she told me about what they had been up to and I tried to listen, fighting to come back. She held my hand throughout. 

I may have been in intensive care, but I’m not one to pass up a meal so after Elaine left I admitted how hungry I was. A memory of toast and jam from when I had an operation as a child flooded back to me – the kind doctor brought me tea and toast and explained how the morphine drip worked. There was a handy little button I could press as soon as I felt sore. I was still on oxygen but I managed to eat a piece of toast and slurped down the tea.

I wasn’t really aware of any pain for the first few hours, but I hit the morphine button regularly just in case it began creeping in. I just felt weak and stiff – I couldn’t really move much and I kept dozing. There was a man who seemed to be in a lot of pain a few beds along who was groaning loudly and the beeping was constant and in different harmonies. I would panic when my alarm went off. 

The gap between my parents and Elaine’s first and second visit that day seems like forever – I remember watching the clock and the door desperate to see them. I felt fragile.

They did come through that door eventually, after going for some dinner and wine. Inside I was dancing but in the morphine haze I’m not even sure if I smiled. They brought all kinds of goodies and Elaine even brought a rose which I wasn’t meant to keep due to it being intensive care. But some kind nurse let me. Apparently I was cracking jokes about my sexy chest drains. 

That night was horrific – I had doctors standing over me in the middle of the night discussing me like I was an inanimate object, which I told them off for, had a searing pain in my chest and realised when I had to get up to the toilet in the middle of the night that I was going to have to allow myself to recover slowly. I wasn’t allowed to put weight on my hands – thankfully I had been working on my core strength in the build up to the operation as that was what pulled me up once I pushed my feet off the end of the bed.

It was one of those sleep free nights where I was so grateful for one kind nurse who minded me throughout and even made me laugh a little. But I do remember thinking I’ll be ok and at that point there was no sign of crisis. 

More tomorrow.

258/365 – Planning for South East Asia 

For as long as I can remember I’ve been keen to explore far flung places- I’m hooked on the adrenalin and excitement that is brought about when exploring somewhere completely alien. I never feel as alive as when I’m out of my comfort zone. While I’ve seen some incredible places in my 28 years, there are large chunks of the world I’ve never made it to. South East Asia is one of those places and it’s long been on my list. 

Elaine and I have been considering where to go next year – mainly because we are broke at the moment and need some fun travels to look forward to. So the other day, when taking in a charity bookshop, I came across an old edition of Lonely Planet’s South East Asia on a show string. Despite its wrinkled appearance, I couldn’t resist coughing up the £2 and have been adding more wrinkles to it ever since. We’re both excited about the prospect and trying to figure out where to go and when. 

Alongside the excitement, there is something else. Something stronger and the more I read, the more it grows. I’m scared. A bit of nervous apprehension can be expected, but it’s more than that. 

I’m scared about:

  • The medical care that will be available if I get sick
  • Being on immunosuppressants in a continent which my body is completely unfamiliar with
  • Spending a lot of money on a trip I won’t be able to enjoy because I’ll be weak/worried about getting sick
  • What it means for the other places I want to see if this trips fails

These are all natural concerns and I’m not going to let them stop me from going. What I am going to try to do is get myself as strong as possible and get all the injections required with plenty of time to recover. I also plan to use it as motivation to reduce my aziathioprine immunosuppressant. Finally I’ll do some research on what myasthenia gravis is called in the country/countries I’m going to and medical facilities.

If you’ve been to any of the countries in South East Asia with myasthenia gravis, please share your experiences and any tips in the comment box below. 

257/365 – Better treatment on the horizon?

For anyone else who gets Google news alerts for myasthenia gravis, you may have felt a flutter of excitement yesterday. After a busy day, I only picked up the article tonight on the train to Edinburgh. When I read the words ‘better treatment’, I blanked out the rest of the headline. 

The article by news-medical.net was focused on a grant provided to Dr. Jeffrey T. Guptill, MD, MA, MHS, Assistant Professor, Department of Neurology, Duke University, by the Myasthenia Gravis Foundation of America. It states that they ate seeking ‘a better more targeted’ style of treatment – apparently most of the treatments at present aren’t very targeted (no shhh Sherlock). This would apparently mean less negative impact on the immune system, fewer unnecessary side effects and infections.

The grant will allow the team to investigate immune system pathways and cells that show evidence of MG. The article said:
‘This is important because there are existing drugs that target these pathways, so if it can be determined that they are useful, it would pave the way for clinical trials for certain drug therapies.’

Another part of the treatment will be creating a ‘multi-center research network of MG centers to develop a repository of MG blood samples for use in future studies’ – wonder if UCL will be involved in that, where I recently put myself forward to be part of a research database. 

The idea behind this is that this network could be of wider benefit than just for people with MG – it  could be used for studying other autoimmune diseases, creating a ripple effect to improving treatments in other areas.
While I’m not getting my hopes up about any rapid improvements to treatment, it is good to hear that the medical community recognise there is an issue with the hit or miss type of treatment at present. Targeted treatment