Tag Archives: 365 days of myasthenia gravis

59/365 – Airport reality check

You may remember me letting the secret slip that after my thymectomy in September I developed a super power. Ok, I’m not sure how ‘super’ or useful setting off shop alarms on entry and departure is but it’s certainly a unique skill. Just me and the serial shoplifters. Well, after feeling all special, the trip over the weekend has made me consider whether I’m just a normal afterall.

Both on the way through Luton security and in Copenhagen, I didn’t set the alarms off. In fact, I wonder if I’ve passed my powers on to Elaine as she managed to set it off on both occasions.

Superhero?

After asking the Myaware community, I was told in no uncertain terms by people who have also had thymectomies that it is odd that I’m setting shop alarms off. My consultant explained the different technology used in shop alarms, magnetic something or other, in comparison to alarms looking for metal. He agreed that it was strange and that I should try to see the surgeon. I did try to organise it but the appointment didn’t work and I’ve not heard back since (task for today’s to do list). 

People in the Myaware Facebook group did mention that airport security alarms have gone off for them because they are triggered by metal – which I have in abundance in my chest thanks to breast bone being knitted back together with what looks like chicken wire. 

On this occasion, I even mentioned to the security guard that it would probably go off. In this instance, it was straightforward as both sets of security guards spoke perfect English but I have worried about what could happen when I’m further afield. Would I get put head first through the bag check to scan my chest? Actually, that sounds quite fun. 

Anyway, the situation now is even more unclear and I’m hoping my surgeon will be able to reveal all if I can get another appointment lined up. In the mean time, I’m still thinking about my costume – a wooly hat seems to be my trademark in the photos so far so that will be included. Does it make me an unsuspecting badass or a mere mortal with a penchant for comfort? 

57/365 First impressions of Copenhagen

We finally made it to Copenhagen around 18 hours after our supposed arrival time  (10am Danish time) and were met with light fog and a bumpy landing. However, as we stepped into the airport, with its walls of glass, the winter sun broke through the clouds as if to welcome us and had the decency to stay out for the remainder of the day. 

In typical Scandinavian fashion, most things were really straightforward – from no lines at passport control to the baggage being ready right away, from sign posts for everything (including how many minutes walk away you are from the departure/arrival gate) to a cheap and quick train journey into Copenhagen Central station. If you wanted, you could probably switch off your brain and just let life happen to you here – even the doors open and the toilets flush themselves. 

I knew I was going to love this city on exiting Copenhagen Central station when the first thing I spotted was the Tivoli theme park. There’s not many cities with a historic theme park at their heart and this one greets visitors with fake Alp-like mountains (see below – more of my favourite photos below).



It was literally a five minute walk to our hostel, but we managed to take a wrong turn and found ourselves on a shady street corner where drunks congregated and we overheard the negotiations of a drug deal. We were in the red light district area of Vesterbro, the many sex emporiums and our local, Bar Spunk, gave it away, but even here we still felt pretty safe. 

As we couldn’t check in on arrival, we found ourselves having brunch at a local restaurant, Apropos. It was the trendy kind of place you would seek out, and after our 5am start the brunch buffet went down a storm. 

Although it was only 12am, I was keen to get out and see the city assuming that later my energy levels would drop. Carrying my overloaded plate back to the table, I felt my arms shake and was worried I could at any moment drop it. Sleep deprivation has such a strong effect on my muscle strength. 

Anyway, after a short rest, we ditched our bags and headed out with our new camera to explore (you should see an improvement in the photos today). While there is quite a bit to see in Copenhagen, the fact that it is compact makes it very easy to fit a lot in. We managed to see the main square, with the Town Hall, Christiansborg where the Danish parliament is, Nyhavn (the iconic multi-coloured harbour), Amalienborg Slotsplads (where the royal family live), Churchill Park and the Little mermaid statue. We then crossed Sortedams as the sun was setting to Norrebro and had drinks and dinner in this up and coming neighbourhood before walking back to our hostel. I think we must have covered about 6 miles all in all so by the time we reached the hostel we were absolutely exhausted. Saying that, I struggled to sleep last night but that’s another story. 

First impressions 

Everything seems to be easier here  than in London

I guess you could say where doesn’t feell that way but it’s strange for a capital city to feel as calm as Copenhagen. Although it’s part of the most densely populated country in Northern Europe everything here feels spacious – the streets, pavements and even the space between tables when dining. This, along with the more relaxed pace that people seem to operate, the abundance of water and green spaces and the culture of taking a coffee break (in part to warm up) gives Copenhagen a very tranquil vibe. It now makes sense that many people I spoke to suggested they come here to revive themselves by drinking good quality coffee and reading/writing. It’s beauty is also restorative.

The food and cocktails scene is thriving

Literally everything I have eaten here so far has been incredible. I decided to give the diet a complete break this weekend and I’m glad I did as the sweets are to die for. Like London, the cocktail scene is thriving here and most bars offer a wide selection of hot and cold options. I’ve yet to try one, but Elaine said her hot toady cocktail was to die for.

Bike thieves must be less of an issue

Theft of bikes and prams here must not be much of an issue as across the city they are left outside without being locked up. I read that sleeping babies are often left outside in the prams too, but haven’t witnessed this yet. I wonder if because bikes are so common here, whether they are not worth stealing. Elaine pointed out that even without the thieves, if you left pyr bike unlocked in the UK or Ireland you’d probably get drunk youngsters taking them for a spin for a laugh and not thinking to put them back again. I wonder if drunk tourists do this in Copenhagen?! 

– Rough sleeping and alcoholism are more common than I had expected 

Having visited the other three Scandinavian countries, I wasn’t prepared to see as many rough sleepers and alcoholics here. Although I remember a few in a couple of Swedish cities I’ve visited, it was nowhere near on the scale that I’ve witnessed here. Like the numbers keep rising in London, this suggests to me that Copenhagen may have it’s own crisis. I did wonder whether there had been an increase of rough sleepers from other parts of Europe, but the majority of people I’ve seen look very Scandinavian. For a country with such a proud social care record, I wonder how much of it is an after effect of the recession. I’ll definitely be looking into this on my return. 

It doesn’t appear to be particularly disability friendly

Like Luton airport, the walk in the airport from arrival gate to luggage collection felt at least 2kms long if not more and there was no assistance in sight. As I was exhausted and carrying a heavy bag, I really felt the distance in both airports. In Copenhagen itself, I’ve not seen much assistance for disabled people as many of the buildings seem to be quite old and inaccessible. I’ll hopefully be able to clarify whether this is the case by Monday. 

Below are some of my favourite pictures so far:

1. The love locks at Nyhavn

2. Outside the Town Hall – delighted to be here

3. The rough sleepers outside the Town Hall looked less delighted

4. Granola is just one of the lovely cafés I’ve enjoyed a delicious coffee in

5. Our local, Spunk bar 

6. The Little Mermaid statue

7. My lovely lady at sunset in Churchill Park









25/365 – Consultant Question Time

Yesterday I had my first appointment with my consultant since October. The last time I saw him I was apathetic after the lack of immediate results from my thymectomy. This time I had a long list of questions for him and I’ll go into some of the answers he gave over the next few posts. But for today I’m going to stick with the overall consultant experience.

Let me first say that I know I’m very lucky to be seen by a specialist. I may criticise the NHS from time to time but I would be lost without it. Also, none of the following comments are meant to be critical of my own consultant – just a reflection of my feelings.

From the first time I visited my consultant, when I had been waiting for months and was delighted that I would finally start treatment, the visits have left me feeling confused and low. We go through the same routine each time – a rushed ‘how are you doing’, a quick assessment of my vision and the strength in my muscles and then a re-evaluation of my drugs (normally an increase). Occasionally, to mix things up, I get four vials of blood taken. There is never talk of an overall plan nor is there talk of lifestyle factors unless I bring it up.

I must say yesterday was better because I ignored the voice in my head saying ‘you are keeping this very busy man from other more important work’ and asked him my questions. Those extra 5 minutes or so gave me a lot more food for thought, and more material for this blog, but I was still overcome by a low mood.

My MG feels black and white after leaving my consultant – still there or all clear. But anyone who has the condition knows hardly a day goes by without a new shade of grey revealing itself. It’s the day-to-day battles that make that frivolous ‘how are you doing’ at the start of each appointment near impossible to answer.

I guess the heavily scientific approach of consultants make hope, other than the next dose of drugs working, a challenge. While this is good in that there is never any false hope, for the same reason it is hard. Anyone with a condition like MG knows that some days you need to believe that you will get better because the alternative mindset is bleak.

So what’s the answer? Well, consultants are extremely busy people and I understand the job isn’t to provide counselling or spiritual guidance. While I’ve never been offered it, I know that the NHS offers counselling and alternative therapies to those who might find be suffering from depression or low moods as a result of their condition. I do wonder whether on these infrequent consultant visits, whether it might be worthwhile to have a nurse assess the more psychological side of living with MG before the doctor assesses the purely physical side of business. Again, a five minute chat about living with the condition might eliminate the patient’s feelings of being a medical experiment.

Today’s image is Charlie Chaplin and I who I ‘bumped into’ after my appointment. I needed some light relief and he was just the man to give it to me.

21/365 – Damn you chest infection

So I’m about to finish a course of antibiotics today and my chest infection lingers on. It’s the first experience I’ve had, since upping my immunosuppressants, of the dreaded lingering infections. Perhaps I’ve been a little too blasé about it. Today’s photo is me after yoga – probably shouldn’t be doing that with a chest infection. Whoops.

I went to get my bloods tested last week and got a call from my doctor the following morning asking me to come in as my white blood cell count was high – normally what happens when your body is fighting infection. I’d been feeling a bit under the weather for a few days, sore throat and chesty cough, and my doctor thought it best that I go on antibiotics.

Now I’m almost a week down and I do feel better but the cough bit hasn’t shifted. I have an appointment with my consultant on Monday, who will no doubt lambaste me for not taking it seriously/dealing with it sooner as the doctor and pharmacist have done already.

The thing I’ve found most frustrating since starting the immunosuppressants is the constant runny nose – no matter what I’m doing, the drip drip drip lingers like an annoying younger sibling you can’t shake (I can say that – I only have an older brother so I am that sibling). In the most romantic moments, when I’m slow dancing with my other half in our living room to one of our favourite records, I’ll ask her to hold that pose while I run to blow my nose. Nothing says ‘kiss me now’ like a snotty face.

Sounds like nothing, right? Well it’s bloody annoying and the worse part is I’ve become hyper sensitive to the number of ill people around London. I’m terrified that my puny immune system is a magnet for bugs.

The truth is I’m not sure whether the immunosuppressants are doing much good for me at all. I felt better when I was just on the steroids and mestinon and I’ve managed to get my steroids down to 10mg a day. Never mind the fact that I can’t go out in the sun without factor 50 on or go swimming in open water because of the weird bugs I might pick up – I’m fed up of the constant sniffle. I’m just hoping I can convince my consultant that my body is ready to get off them.