Musings and Snoozes

When you can’t ‘Just Keep Swimming’ 


I admit it. I am thoroughly fed up. I spend so much time and effort keeping my head above water, but right now, I don’t have the energy to do it, so I’m just going to let the water take me for a while and have a moan.

It’s Christmas. For anyone who spends even five minutes with me in December, you will know that this is my absolute favourite time of year – the lights, the music, the presents. Sadly, it’s also stressful and busy and overwhelming at times too, and as a consequence, I’m sicker than I’ve been for a while. And I hate it. 

For the third night in a row, it’s 4am and I haven’t slept. I am so so tired, but my body just won’t cooperate. Tomorrow I will be exhausted and have to make choices between things like showering and packing for new years, getting dressed or making breakfast. If I don’t eat something, I can’t take my meds and then nausea will kick in, but the very effort of eating something will make me feel sick anyway. On the bright side, I bought anti-nausea lollipops from Not Another Bunch of Flowers, and they’re amazing, so providing my achey fingers will cooperate and unwrap one, at least they’ll help.

Most of all, I’m just angry that my body can do this, that it can take a perfectly lovely time of year and just break. I haven’t been able to see friends, to go on my planned trip to the zoo, or even do much more than get from bed to sofa most days, which in turn just feeds my guilt and anxiety. I can’t help but worry about being judged, despite knowing that anyone who is judging me doesn’t deserve to be in my life anyway, but the irrational anxiety takes over, and really, that’s not how I intended to spend my Christmas break. 

But it will end, it always does. If my body could just handily reset at the start of 2018, that would be great. This definitely isn’t how I want to be going into a new year, especially one that I’m excited and optimistic about. But I’m grateful, even in the midst of a flare and feeling down, I am incredibly grateful for how well loved and looked after I am – all the people who do so much to help me on a practical basis, who kept me stocked in blankets and fluffy socks and hot water bottles, and those who message me each day to check how I am. It means the world to me. This can be a very lonely, guilt-ridden illness at times, but every time I think I might sink, someone amazing comes and pulls me back out of the water, wraps me in a warm blanket and tells me it’ll all be ok, and I wouldn’t change that feeling for the world ❤️

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A whole new meaning to “baby brain”

CourageIt’s taken me a while to reach the point where I can talk about this and try and organise my thoughts enough to get everything down on metaphorical paper. All of this has been swimming around for the last few weeks, but I think I’m about there to be able to make sense of it all now.

 

For the last year or so I’ve been thinking about children. Having them I mean. We’d pretty much decided that we wouldn’t have any, that it would be too much for my already slightly broken body to deal with, that the risks were too many, and that mentally I wasn’t prepared to go through it. But the body is a funny thing, it doesn’t listen to rationale, and I’m a firm believer that my ovaries have a mind of their own. And so tentatively, my friends and families’ reminders that I wouldn’t be alone, and that I have an incredible support network (both medically and family wise) started to seep in, until one weekend in Newcastle, ten minutes before we were due to go out, I decided to spring on poor unsuspecting husband that I wanted children. Well done there Lizard. Suffice to say, we didn’t exactly have much of a chance to talk about it, so he tried not to look too scared, while I reassured him I didn’t mean that very minute.

Fast forward several weeks and my head is swimming with decisions and information and studies and research and fear and excitement.

One huge plus point to come out of my anxiety and depression is that I’m seeing a Psychiatrist. After 15 years of essentially dealing with this by myself, I am finally getting some help. And what’s even better is because my Psychiatrist manages my medication, he is in the best possible place to help me work out the what to do regarding my current medications and future options regarding pregnancy. Because it turns out it’s hella complicated. Mostly because I’m on a very weird combination of drugs for the fibromyalgia and autoimmune, some of which, Duloxetine in particular, hasn’t had a lot of research done on it in terms of effects on pregnancy. Which makes it a very scary thing. I’ve had my GP, my Rheumatologist and my Psychiatrist all contacting various health authorities etc to get as much information as possible, and what it essentially boils down to is “we’re not sure”.

 

Now at this point the obvious answer is to come off said medication and switch to something different. But that’s not so simple either. The withdrawal from Duloxetine is incredibly horrible. I know this both from the look my Dr gave me when we talked about it, and from the times I’ve forgotten to pick up my prescription or, for example, the time I went to the US for a week and forgot to take my meds with me (well done again there Lizard). What’s worse is that there is no finite time for how long withdrawal will last. My Dr’s words were “in some people it’s a couple of weeks, others it’s months, and others……well sometimes it never goes away”. Yay. To give you an idea, just some of the things it causes are intense pins and needles in my lower arms and legs, which in turn causes a kind of strange weakness that makes me fall over and drop things, dizziness, nausea, paranoia, depression, self harm tendencies, and suicidal thoughts. The majority of which I am or have been prone to at the best of times, without this!

 

So here I am, essentially faced with the choice of stay on the medication and hope that the risks to the baby are indeed unfounded and minimal, or come off the medication and be such a miserable, broken, semi-suicidal delight that the chances of being in any kind of state to make a baby is slim to none! What a prospect eh?

 

However, awful as it sounds, there is hope. I have never had as much medical support as I do now (thanks Private Health Insurance), and together we are determined to make this work. Plenty of people with my condition, or indeed any condition that Duloxetine treats, have gone on to have a healthy and happy family so this is possible. It’s going to take some careful experimenting with dosages and drugs, there are undoubtedly going to be some scary moments when the experimenting isn’t working, and I am going to have to really learn to look after myself and be completely honest about how I’m feeling – no more, “yeh, I’m fine”. But despite all of this, I am incredibly excited. I never thought I’d reach this point and to have such a purpose at the end of it all is the scariest and most exciting motivation in the world.

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Sniffle sniffle cough splutter 

You’d think that for someone who is ill literally every single day, I’d be better at dealing with having a cold. But no, I have spent the day feeling quite sorry for myself at times, and wishing I could stop coughing myself into a headache. 

But to avoid a full on mope, which ultimately makes me feel worse, I have taken little steps to brighten up my day. So here’s my list of how to survive being extra sick on top of normal chronic sick:

  1. Have a bath. Fill it with lovely smelling bubbles and enjoy the heat working its way into your aching muscles.
  2. Read a good book. This one depends on how much concentration I can manage – fatigue is bad enough at the best of times, but worse when extra sick – so a book with short sections or chapters is good. 
  3. Sleep under your favourite blanket. It helps relax and sends you to sleep quicker. 
  4. Have a good cry. This might sound counterproductive, but it’s good to get it all out when you’re feeling bad. Bottling up tears as well as snot never does anyone any good. 
  5. Make yourself pretty. Wallowing in your own filth is tempting, especially when fatigue is so high, but clean hair, eye liner, and proper clothes (or your best pyjamas) really helps. 
  6. Hug a pet. Whether they enjoy this or not. Suffice to say Bella doesn’t, but it’s the price she pays for being able to sleep on the bed all day with me. 
  7. Finally, have little things to look forward to. I know I’m going to be sick for a few days now, but if I think about it like that it gets me down. Instead I’ve put some dye in my hair tonight so I know I’ll wake up with new bright hair tomorrow, I’ve bought food and drink I know I’ll look forward to having in the morning, and I’ve finally brought the decorations down from upstairs so I know that the tree *will* be decorated eventually.

Of course copious amounts of chocolate also helps, but that one goes without saying, right?

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