Musings and Snoozes

“I am because you were” 

I think it’s safe to say that on the surface at least, most of my tattoos are not deep and meaningful. Those who know me a bit better know that the placement of my wrist tattoo is significant, that the words on my arm are lyrics to my favourite song, and that everything else is a nod to my pagan beliefs, while being pretty in the process. But today, along with my amazing mum who got her very first tattoo for her 70th birthday, I also got my first tattoo with a real meaning.

“I am because you were”. A short and simple phrase which holds a lot of meaning, in particular to remember my Dad. I have toyed with the idea of getting something for Dad for a long time, but I didn’t want something overt, his name or his birthday for example, nor did I want to get something silly, like a snail (he was called Brian, therefore Brian the snail), so when I came across these words, they seemed perfect. Even more so in the last few weeks, as I’ve been talking to my therapist, telling them about myself, my life, and my parents. It makes me incredibly proud of who I am because of both my parents, and actually because of who I once was too. These words encompass all of that – I am because of my Dad, I am because of my Mum, and I am because of who I was and who I’ve grown to be.

And so this is for all of those things, for all of those people, but most significantly, for my lovely Dad, who (for better or worse!) played such a big part in making me who I am today. 

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Sometimes you just have to Eeyore 

I’m pretty down today. I realise I don’t often admit that. I write about the what’s and how’s and sometimes the why’s, but I rarely just say, I feel pretty sad.

Today hasn’t gone as planned. After almost a week of being pretty much bed/sofa ridden with a cold and cough, I finally started to feel a little better yesterday. My sinuses have eased so my face doesn’t feel like it’ll explode, I can breathe without choking everyone in a ten mile vicinity with olbas oil, and while I still sound like a croaky frog, the cough is tolerable. So I went to bed last night feeling pretty positive. 

7am this morning and I hadn’t slept a wink. Not because of pain, or being ill, or even anxiety. I just couldn’t get my head to shut up at all, and so by 2am I gave up and read a book until the early hours.

But that wasn’t the plan. It was a good book, but not the plan. The plan was to get up, go to Starbucks, get a few hours work done, and then come home and dial into my afternoon calls. Of course instead, my body decided that 7am was a fine time to fall asleep at last, and I’ve lost almost the entire day. I’ve done no work and missed my calls. And that makes me angry and frustrated, and more importantly a little sad. I know it’s just my sleep dep making it worse and still being ill, but it makes the “what’s the point?” thoughts creep in, closely followed by the guilt and worry that people will think I’m lazy or not good at my job.

It’ll pass, I know it will. And I’ll head to Starbucks in a bit and probably spend the early evening working from there with a coffee in hand, but I just thought it was worth writing about being sad for a change. I concentrate so hard on the physical, and even the anxiety, that sometimes I forget that this is a feeling too and if nothing else, it’s worth acknowledging. 

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The Anxiety Monster 

This afternoon is Session 1 with my new therapist. Husband jokes that I have so many doctors now that he needs a reminder list every now and again of what they all do. He’s got a point to be fair, it feels like that sometimes.

So this afternoon is Marie Claire (that’s her name, not the magazine, that confused Husband). She was recommended by my Psychiatrist, who in his own words, described her as perfect for me. I swear he had a glint in his eye when he said it, which both worries me and makes me hopeful at the same time. This afternoon will involve talking, not that the sessions with my psychiatrist didn’t, but he, by his own admission, is more about the drugs than the talking, and we’ve focused so much on baby plans that I haven’t had to delve too deeply into the realm of “so how does that make you feel?” yet. 

First battle though is leaving the house. As in physically putting my hand on the door handle, opening the door, and leaving. I’m working from home today, due to sniffles and snot and ickiness, that I don’t really want to share with the office, and that, for some reason, psychologically makes going out very hard. I have yet to figure out what is so hard about it, or why, when I happily leave the house for work every morning, should it become difficult now. Because it’s not the seeing Marie Claire that’s bothering me (nervous though I may be), nor is it the driving there (driving relaxes me). It’s cold outside, which obviously I don’t enjoy, but that doesn’t scare me. So it’s irrational for sure, but I’d like to know what exactly I’m being irrational about.

So that’s today’s first battle. Putting on my shoes and my coat, grabbing my bag, picking up my keys, and standing at the front door for a good ten minutes convincing myself to just leave (while the dog tries to decipher whether this means she’s coming or not. She’s not). On the plus side, it makes the thought of talking about my deep and innermost feelings seem a positive delight in comparison. There’s always a silver lining. 

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My New Year’s Resolution? To Be More Selfish 

Sometimes it takes a group of people, sometimes it’s family, sometimes it’s friends, sometimes it’s just one person, and sometimes it’s unexpected, but whatever it is, it can be enough to make you rethink the way you see things.

I spent a huge amount of last year feeling guilty. I hadn’t realised just how much until I started having to talk about it, and hearing, what I’m now beginning to see as rational and reasonable responses that a) it’s not really my fault, and b) why would I put so much time and energy into worrying about things and people who make me feel this way. But that alone is a hard thing to type. I want to make excuses, to say “oh yeh, but they don’t mean it”, and “it’s just one of those things, I can’t really change it”. But I have to fight that and I have to stop. I have never been more aware of how important it is to look after myself and to not only be kind to myself, but to actively stop hurting myself – to stop putting myself through it because I believe I haven’t tried enough, that I haven’t met other’s expectations, that somehow I’ve failed.

Because I haven’t failed. I get up every single morning feeling how most of you are probably feeling this morning after a good New Year’s Eve – tired, achey, nauseous, like you need a week’s worth of sleep to recover, that every single slightly too loud sound or too bright light physically hurts. That is my normality. That is my good day. When I don’t feel as though I’ve been struck down by full on flu, that is a good day. When I can sit in my car for half an hour and not get to my destination and feel like someone’s punched me in the back and the hips, and that really I need to close my eyes to recover, that is a good day. Sometimes I push through my bad days, sometimes because I need to, sometimes because I feel too damn guilty not to, and sometimes, at the worst of times, because someone says “come on, it can’t be that bad”.

But I’m done with that. So in all honesty, my New Year’s Resolution for 2018 is merely to be more selfish. Not to the detriment of others, obviously, but always to the benefit of my health, both physical and mental. So this is my New Year’s warning – I need this year for me, I need to get back to some sort of recovery, and most of all, I need the support of those around me to do it, to know that they’re on my side. I miss who I used to be, back before I was sick, but I’m excited about who I could be again. I won’t always be the same, I can’t be the same, so there’s is nothing to do but to accept that, to put the pieces back as best I can, and embrace whatever comes out the other side. And to those who are still there with me, know that you are worth the moon and the stars to me.  

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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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But what if I fall? Oh my dear, but what if you fly? 

There is no right or wrong decision. Well obviously sometimes there is – me eating an entire pack of chocolate biscuits for tea was probably the wrong decision – but when it comes down to it, the big stuff, the life changing stuff, it’s not right or wrong, it’s just a decision, and everything else will follow. 

I’m a chronic overthinker, not helped by the fact that I can see every possible outcome from every possible side, which effectively makes my decision making skills null and void. But I’m learning, or at least I’m trying to learn, with some help, that sometimes you have to just go with your gut instinct and jump. Do everything you can to prepare of course, but in the end, close your eyes, and just leap! 

And quite frankly, that’s terrifying. But what’s the alternative? Standing on the edge, looking down and thinking “but what if……?” repeatedly? Because as much as I think of and consider every possible outcome, let’s be honest, it’s the bad outcomes that stick, the ones that make me go “yeah, but what if I can’t?” that cloud all the other “but what if I can?” thoughts. That’s human nature. 

So bollocks to human nature, so to speak. The universe isn’t waiting for me to screw up, it just wants me to make a decision. So I’m jumping, or at least dipping my toe in the shallow end, and to hell with fear and doubt and failure and “what ifs”. I have me, I have faith, I have family, and I have friends, not to mention sheer stubbornness. Plus my life’s mantra of “it’ll all be fine” has got me this far. That’s gotta be enough…. Right?! 

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My Rock’n’Roll Life 

Nobody actually ever tells you how to put on a hospital gown. This really annoys me. You just get handed this oversized piece of material and you’re told to change. What if, like me, you didn’t grow up obsessed with a million hospital programs, from Children’s Ward, to ER, to House? That’s the only way I ever knew that actually it’s normal to have your arse poking out, as opposed to your boobs. Because obviously.

Suffice to say I’ve been sick, hence the hospital gown (although I thankfully was allowed to keep my leggings on today because yay, cold and Raynauds Syndrome). I developed Costochondritis out of seemingly nowhere last week, so I’ve been in for tests today to make sure that my chest is all in one piece and doing what it should, and also for more bloods to see what else we can find to add to the ever-growing list of ailments while we’re at it. First choice is anaemia, which actually I’d quite happily take, since it’s easily treatable. When you have three incurable, baffling, chronic illnesses, treatable becomes a positive joy of a prospect. As for what else they tested for, I’m not entirely sure. It’s just a bunch of incomprehensible letters, although I spotted thyroid on there, which bless them, they test for every six months. You can’t fault them for trying to find something fixable.

On the more positive side, I’ve had a lovely weekend away with extended family, which despite the incredibly long journey, was actually very restful and relaxing. It even included a half hour massage, courtesy of the spa across the road from the hotel, which was bliss, and has finally loosened out the bottom of my back. I’m paying for the travelling of course today, but I’m working from home due to the hospital appointments, so that’s helping. A couple of restful evenings and I hope I’ll feel a little brighter, rather than the slight train wreck I feel at the moment.

In the meantime, I can be found of the sofa, with my blankie and the pooch, living a totally Rock’n’Roll lifestyle. 

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A little moment of success 

I went to the gym. For the first time in a year. I may die tomorrow, but right now I feel pretty smug. My body less so. My body is more of the “erm, excuse me, what is this? We don’t use these muscles. We don’t do the thing”. I told it to suck it up and it’s getting a hot bath (and hopefully a good night’s sleep) as a reward.

My mind is quiet too. Such a blessing after weeks of it being in overdrive. I know it’s only short-lived, but that’s ok, I’ll take the peace where I can. Of course I need to remember this feeling the next time I’m feeling anxious and edgy, because the instinct will always be to hide and say “I can’t do the thing”. 

But it turns out I can do the thing. With a bit of uncomfortable pushing, some much needed support from husband, who comes with me to make sure I don’t pass out at the door, and some good old fashioned stubbornness, I can do it. 

So me and my smugness are going to go relax with new Lush goodies, and try to ignore the aches and pains I’m going to feel tomorrow!

Today’s challenges: anxiety dreams, edginess, shoulder ache, mild back ache. A fairly good day!

 

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