Today, I’m feeling wiped out for the first time in months. A week ago I sat next to someone at Childline who was under the weather and I’ve been hoping ever since that I’d managed to avoid picking up any bugs. It seems that was wishful thinking.
It’s been coming on for the last few days; dizzyness, feeling sick and mainly being totally lethargic. I probably didn’t help the situation by having a few glasses of wine on Sunday night and a hard gym session yesterday (pictured above).
One week later, I’ve not been able to attend my shift due to feeling unwell. After finishing work, the only thing I have energy for is heading straight home to get tucked up in bed with my book, a cup of something hot and a hot water bottle. I’m hoping I can shake it before my friend’s wedding reception at the weekend – if anyone could spare some healing vibes, please send them this way.
You would think having had myasthenia gravis for a year and a half I would know the best way to ask someone about their condition. I don’t. This is mainly because I’m not sure there is a good way to ask.
First of all, if being asked about my condition has taught me anything it’s to figure out why I want to know before opening my mouth. If it’s simply out of curiosity or intrigue, I’ve made the decision not to ask.
People are naturally inquisitive and, as a trained journalist, I often find a probing question slips out before I’ve thought twice. But the impact of that question about the thing that appears different can be significant – it can change someone’s day. To have that kind of effect if a question is asked vacantly is a bit crap.
So if I’m not asking out of curiosity, why am I asking? To offer support? Sometimes yes. The counselling I do for Childline has taught me the difference between empathy and sympathy so I believe I can be an empathetic ear if people seem like they want to talk about it.
Sometimes it may be a desire to connect. Is that selfish too? Yes and no – as I mentioned here there is a lot to be said for being involved in a community if you have an illness like MG that not many people understand. Connecting with someone who can relate to some of your daily struggles feels good.
When I think about the difference in how I respond now compared to a year and a half ago when someone asks me about my MG it’s simply that I speak about it if I feel like it. The people I don’t mind speaking to about it have asked as part of a natural conversation – like when I’ve discussed my diet or medication. It comes up naturally often if people want it to so my advice would be not to ask out of the blue.
When I developed a sore throat over the weekend, and my arms started to feel weak, I could hear my doctor’s words echoing in my head from the last time I visited…
If you feel a sore throat coming on, come and see me right away….
Why? Because on immunosuppressants sore throats usually equal infections and infections are dangerous for someone with a repressed immune system.
So I listened and visited the doctors today having decided I would work from home. Calling this morning I thought it would be better to be safe than sorry and all that – I’m far too sensible these days.
After doing some work first thing, I begrudingly went along for my 10.30 slot knowing from previous trips that it would be a miracle if I made it out before 11am. When I was still sitting waiting to be seen at 11.15am, I began to get annoyed thinking about the amount of time I’ve wasted in waiting rooms. What would I do with that time if I could get it all back? Something bad for my health.
Anyway, once I was taken, my doctor had me in and out in four minutes. I know because I was that frustrated I timed it. What I will say for her is that she really listens and, although time was short, she managed to help with a couple of things including changing prescriptions and providing blood test forms.
I’m back on the antibiotics. Whether it’s an infection or not, I’m not sure but when she checked my throat she thought it better to blast it. Hopefully I’ll feel a difference over the next few days because at the moment there is no time to be sick. On the plus side I’m looking healthy at the moment, so hopefully I’ve caught it early.
I’ve recently been informed that a small number of people with myasthenia find a couple of terms related to the condition offensive. These are: ‘myasthenic’ and ‘sufferer’. I just want to apologise about my use of these terms and any offence it may have caused.
More interestingly than ‘sufferer’ which has connotations of being a victim, the reason some people have taken offence to ‘myasthenic’ is because it makes them feel defined by the condition. Although personally I don’t mind the term, I understand the frustration. MG can take up a lot of your mental space and so it’s better not to reinforce it’s prominence in your life through language. The preferred alternative is ‘people/person with myasthenia’ – bit of a mouthful but it suggests working with the condition rather than it dominating.
Defining your identity wholly around MG is not healthy – it suggests that it is in control of your life. While the condition does fluctuate, so can be difficult to predict, it doesn’t need to be your defining characteristic. It suggests giving yourself over to your rogue immune system – it suggests passive acceptance. When people describe you, what do you want them to say? Is it simply ….. has myasthenia? Probably not.
Can being defined by MG be a positive thing?
Keeping all of the above in mind, there is a danger of going too far the other way. Many people I have spoken don’t want to ‘come out’ as having myasthenia and that is their choice. They are worried about people’s reactions, about being underestimated and how family members might feel about them being open. I get all this, but I personally feel like there’s a responsibility on me to try to raise awareness about the condition. This is difficult to do if you’re not willing to admit having it.
I’ve seen a lot of social media posts centred around the idea ‘you are more than your condition’ and of course that’s true. But this focus, to me, risks damaging the idea of community that can be really comforting (which I’ll discuss more tomorrow) and also encourages hiding rather than being proud of the struggles we endure and survive. I am definitely more than my condition but I do have to fight against the MG most days.
I’d love to get to a place where people with MG can say that they have the condition and there will be a look of recognition in the person’s face. Even a glimmer of recognition will be an improvement on most conversations we have. While the good work that charities like Myaware to raise the condition’s profile helps immensely, every time someone with MG speaks about their condition they are helping to build a future where the term ‘myasthenia gravis’ will no longer evoke blank expressions.
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.
Although I didn’t want to admit it yesterday, the bug that was doing its rounds with my family and friends over New Year caught up with me today (no doubt partly due to over exertion and sauna time yesterday)
I used to be more resilient, but sadly the drug that suppresses my immune system has made me prone to picking up a dose of the cold. Saying that, due to keeping pretty fit, and eating a lot of nutrients/vitamins, I don’t tend to get anything worse than the unpleasant mild symptoms.
The worse part of getting a cold is it flares up my MG symptoms. Today things are the same with my eye tosis and eyes out of line. My vision was a little double first thing this morning, but it rectified itself quickly. However, I noticed at the height of my sniffling this afternoon that my capacity for swallowing was a tad effected – there were a few stray dribbles down my chin. Thankfully, I didn’t have to leave the house today.
Tonight my lovely other half returned from working away so that, along with a batch of chicken noodle soup and getting cosy on the couch while watching Star Wars, has made me feel less grotty.