Wonk :/

I’ve decided I need to pull my finger out and finalise some of the blog related things I have half finished. Here is the first:

22.11.14

Ok, so this one is Wonk related although also explains why I’ve not posted the warpainty stuff I promised.

The last time I could speak properly, I videoed 3 makeup tutorials. I knew there was a chance I may not be able to speak for long and I wanted to get some posted.

However, when I looked back at the videos I wasn’t happy with the blending of my eye shadow so I don’t want to post. I would rather re-do them.

As I said, when I recorded them I knew there was a chance that my being able to talk might not last for long but what I didn’t know was that the very next day would be the start of what seems to be a permanent state of Wonkiness (I capitalise Wonk by the way to give it its own identity. It’s a thing.)

It was weeks ago now and I’ve not been able to post anything since.

So I thought this time I would explain a little more about The Wonk. I’m not brave enough (at least not yet) to post a Wonk video but perhaps if I explain it in greater detail someone with the same symptoms may stumble across the post, maybe in months or years to come. When I first started to suffer with TW I couldn’t find reference to anything similar online (except things relating to a condition I don’t have – we’ll come on to that…) so I’m trying to put something out there. I can’t be the only person to have had this combination of symptoms.

Anyway, I mentioned in my intro post that I have other chronic conditions. The only ones I think you may need to know about to understand The Wonk are M.E. and fibromyalgia. ME (Myalgic Encephalopathy – see http://www.meassociation.org.uk/about/what-is-mecfs/) is characterised by chronic fatigue but can also cause a whole host of other symptoms. It’s an invisible illness that has a significant impact on a person’s life and impairs their ability to function as they did before they became ill and, as its effects cannot be seen, it’s often misunderstood.

I have been to group ME management sessions which were really helpful. Not only have I learned about how to change my life to accommodate the condition (and to accept the fact that you can’t do it the other way around), it also gave me the opportunity of meeting others with ME which was reassuring. I’ve never thought of myself as someone who would benefit from a group of that nature but it was surprisingly comforting and I genuinely enjoyed getting to know the other people there.

I haven’t yet met anyone with TW as part and parcel of ME though and my ME nurse told me that she had discussed my presentation of symptoms with her colleagues, none of whom had ever heard of or seen anyone with ME presenting with anything similar to TW. That’s not to say that TW isn’t a manifestation of ME… it might be. I don’t really know yet!

Fibromyalgia is a condition with significant overlap with ME and many people have both conditions. Principally, Fibro causes pain although again there can be a whole host of other symptoms to go with it.

Anyway, turning to TW, an episode tends to start with an ‘Elvis’, the night before. The left side of my lip curls up repeatedly and involuntarily. However, unlike Elvis, I’m not trying to be cool. I’m usually trying to sleep. :/ It tends to happen at around 11pm-12am and sometimes wakes me up.

On occasion, my right eyelid droops the day before an episode of TW That was the precursor to the first ever episode two years ago. My eyelid dropped just a teeny little bit. I noticed it when I was putting on my makeup before work. In the office, I asked a colleague whether or not she could tell as it felt and looked really obvious to me. She said she could see it when I pointed it out but wouldn’t have noticed if I hadn’t said anything.

I thought it was a little weird but I didn’t worry unduly about it. I’d been having weird random symptoms for quite some time before that so I put it down to another one of those things.

When I went to bed that night, I had my first Elvis episode. The left side of my lip started going like the clappers!

It kept me awake most of the night although I did get a few hours of sleep early in the morning.

When I woke up, TW had struck. I couldn’t use the right side of my mouth. When I talked, only the left side of my mouth moved. The right side of my face was all puffy and my drooping eyelid was more pronounced.

I went to the doctor and was told I probably had Bells palsy. I was told that even though my doctor appreciated it was frightening, I shouldn’t worry – it was something that would go in its own time but was likely to take several months. At my doctor’s surgery there was a lady who had recovered from an episode of Bells palsy herself and my doctor asked me if I wanted to speak to her. I did and she was extremely kind and reassuring. She gave me a list of facial exercises I could do and she explained her own recovery, including the timeline which was in excess of a year. I was reassured that it wasn’t going to get any worse and didn’t indicate any underlying problem. Recovery was a gradual process and may not result in complete recovery of musculature control but would certainly improve with time. I really appreciated my doctor’s approach and the opportunity to speak with someone who had had the same condition.

For more information about Bells palsy, see here: http://www.nhs.uk/Conditions/Bells-palsy/Pages/Introduction.aspx

The next day I woke up and it was significantly worse. I was in incredible pain and my speech was slurred and a real struggle. I went back to the doctors. This time I saw another GP who reiterated that it was Bells palsy. He told me not to worry because, if I’d have had a stroke I would still be able to move my eyebrows and forehead. I went home, looked in the mirror and found that I could still move my eyebrows and forehead. I was (I think understandably!) worried but also thought I may be overreacting and being a nuisance to my GP.

That night, I was genuinely frightened and scared to go to sleep. I wrote goodbye letters to those closest to me, just in case.

I barely slept and the following day, it was worse still. I had plans with my mum. I hadn’t spoken to her since it started but had sent her a text message playing the whole thing down a bit but to prepare her for what I looked like. I hadn’t told her I was frightened or what the doctor had said about the potential significance of the fact that I could move my eyebrows. When I approached her village I had to pull over to calm myself down a bit. I was incredibly upset and frightened and I didn’t want mum to know. I didn’t want to worry her.

I can’t remember now what our plans were but as soon as she saw me, they changed.

I forgot – she’s my mum. I can try to hide things all I like but she knows! She could tell I was upset and I think she was also quite alarmed by how prominent the condition was. She took charge and insisted we went back to the doctors which we did. I didn’t have an appointment of course but mum wasn’t going to let that stop us and she became quite vocal on my behalf. She’s not usually like that but she was quite firm in her insistence that I be seen.

All credit to my GP’s surgery, arrangements were made to accommodate me (although by this stage I definitely WAS being a nuisance) and I was seen by the same doctor who had mentioned the significance of the eyebrows and he referred me to the hospital. I headed over for a CT scan which confirmed I hadn’t had a stroke. The doctors at the hospital told us they agreed it was Bells and we left reassured.

I was just about coming to terms with the fact that I was likely to be wonky for quite some time when, three weeks later (on Christmas Eve) I woke up and it had completely resolved. It was the best, most unexpected Christmas present I could have wished for! I was over the moon. 🙂

As a result of its spontaneous improvement, my doctor told me it could not have been Bells palsy. I then learned that in a letter to my GP the hospital doctors had indicated that their view was that it was not Bells. We both became a little concerned that there may be something else going on.

In any event, I was already on the waiting list to see a neurologist as a result of the other neurological symptoms including: nerve pain (sharp needle like pains underneath my fingernails, on the soles of my feet, down my arms and legs and in my face), reduced grip strength and problems using my hands, intermittent tremor, poor balance, increased sensitivity to light and sound, inability to regulate body temperature, involuntary muscle twitches (including my tongue which literally hasn’t stopped moving for two years – no doubt not helping the fatigue), and an increase in frequency of migraine.

I won’t bore you with the whole chronology but suffice it to say that my symptoms have worsened and the periods of ‘non-Wonk’ have become the exception rather than the rule. I have seen two NHS neurologists.

I had typed a whole section about my experiences with these neurologists but actually I think it is only necessary to say that neither neurologist examined me during a bout of TW (although I suggested it) and during my last appointment I was told “It may be a life sentence but it isn’t a death sentence” and asked whether or not I wanted to be discharged. Discharged from consultant care despite a significant increase in frequency and severity of all neurological symptoms, increasing limitations and impact on daily living and no treatment plan? Hmm… let me think about that. Err… nope.

Having been with me during almost all of my consultations, my mum was as frustrated as I was. I’m 37. Essentially I’d just been told that I could be like this for the next 50 years. From the way in which my condition is progressing it appears increasingly likely that, in the absence of any effective treatment TW will become a constant state of affairs. I am no longer responding to the medication which was for a time giving me periodic respite.

So, although I feel it shouldn’t be necessary to do this, I went to see a private consultant

The whole experience of a private consultation is very different from that of one on the NHS. Don’t get me wrong… I’m grateful for the NHS and I appreciate the assistance it has afforded me in the past. I have another long-standing condition and if it wasn’t for the NHS I would not be able to afford the medication needed to effectively treat it. It has to be shipped in from the USA and is ridiculously expensive, so I am eternally grateful to the NHS for that. Also, my doctor is wonderful. She is very supportive and approachable and I know she is also frustrated by the fact that she doesn’t really know what to do with me yet (answers on a postcard…)

However, it really is very different in the private sector. I had an hour’s consultation and really felt the benefit of that extra time. As you can from this mega blog (aren’t they supposed to be short?) it isn’t something that can be adequately explained in 15 minutes. That’s all you get on the NHS.

He was the first consultant to see me Wonky (more down to an increase in severity of the condition rather than fortunate timing). He took his time to examine me and ask questions about my condition. I could see that whilst I was talking he was watching my face to see what it was up to. He asked whether I would mind him speaking to one of his ‘professor friends’ about me. Of course, I didn’t.

It also wasn’t a case of ‘right, time’s up – off you go!’ He told me I had given him some homework to do and said he would follow it up with a letter. He said it might be necessary for me to see his professor friend and I said I would do all that was necessary to get to the bottom of it all.

I’m now just over 2 weeks away from an appointment with the professor in London. In the meantime, as I’ve mentioned, I’ve stopped responding to the treatment that was giving me short reprieves and I’m becoming increasingly unwell. As a result, I’m also becoming increasingly isolated. Some days are better than others but TW just isn’t shifting and when you have to question whether what you are about to say is worth the effort and the subsequent pain and fatigue, you tend to avoid human interaction. My work and social life are suffering. I’m also not able to drive when I’ve taken the only painkillers I’ve found to be effective without completely knocking me out and I am physically unable to do a lot of the things I took for granted before. Some days, I don’t even have the energy to brush my teeth. I barely recognise myself, even from the person I was just a few months ago.

I’m pinning a lot on this appointment…

I hope to have an update soon.

Lou x

4 thoughts on “Wonk :/

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