Musings and Snoozes

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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“Courage is contagious. Every time we choose courage, we make everyone around us a little better and the world a little braver.”

Courage Definition

Yesterday was a complicated day, starting with the beginnings of a panic attack at not being able to find a parking space at the Doctor’s (where ironically, I went to discuss my anxiety), and then later admitting to myself that I needed something to focus on to get me through the rest of the day, which led me to Brené Brown’s TED Talks (as recommended by a friend – thank you Lovely Lady).

And so that in turn, led me to this.

“Courage and Bravery are two different things”

When Dad died, so many people called me brave. And my mum too. Like at 19 and 58 respectively, my mum and I were doing something so amazing in dealing with the natural Circle of Life, and the grief that comes with it, that it warranted being labelled as bravery. It wasn’t bravery, but it was courage. Courage is being vulnerable, being, if not comfortable, then at least OK with being vulnerable. It’s necessary. And that really hit me. We weren’t brave, it was just necessary.

It’s just passed the 11 year anniversary since Dad died, and mum and I often talk about how we coped in the weeks following. Most of the stories are funny – the fact that we lived on take-out for about 3 weeks because Dad did all the cooking and we didn’t know what to do, is one of my favourites. Telling people not to be nice is another – “Don’t be nice to me, I’ll cry!”. We did that a lot. Going to Tesco mere hours after he’d died to buy bread and milk, because we just needed normality. And then shouting at the poor man who chose that same moment to try and sell us a Credit Card and wouldn’t take no for an answer. Pretty sure that was the start of the long running “I’m a poor widow women” get-out clause!

But there were less funny ones too – adjusting to life was hard. When such a key part of your life, of your plans, of your future, your everyday, just disappears, that is incredibly hard. People always say it gets easier with time, and it does, but the reason it gets easier with time is because your normality adjusts. If it didn’t, or if you didn’t let it, then it will never get easier with time. And that’s not comfortable, in fact it’s extremely uncomfortable, but when those people told Mum and I we were brave, our reply was always the same “what choice do we have? We either get on with it, accept that it’s crap, that’s it’s hard, that it’s horrible, but acknowledge that our lives will be different. Or we run away and hide and cry and never get over it.” And that’s courage, not bravery.

Courage can get us through a hell of a lot. Just because it’s not bravery, don’t ever underestimate it. Embrace it, embrace how horribly uncomfortable it can be, how vulnerable it can make us feel, especially when it involves admitting that things aren’t how you’d like or that sometimes you just have to ask for help. Courage is knowing something is difficult, but acknowledging it, embracing it, and attacking it all the same, because it’s necessary. We all do it, it doesn’t have to be something as life changing as losing a loved one, it can be getting out of bed in the morning and doing that one thing you really didn’t want to do, the one thing you’d really rather just run from and pretend it doesn’t exist. That’s courage, and for what it’s worth, I think you deserve to congratulate yourself for that.

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I’m not doing life today. I’d love to, but I can’t

The last few days have been pretty hard. I don’t admit that easily, but I can’t deny that it’s been hard not to just want to curl up in a corner and cry. My body is horribly broken right now – my back is still playing up, my arms and legs ache, my head hasn’t stopped hurting since Thursday, my breathing is sketchy at times, my temperature goes from hypothermia to fires of hell every half and hour, and to top it all off, I’m getting a cold. That’s without taking into account the fatigue, the fuzziness, the anxiety, and the sensory overload which makes every bright light and every unexpected sound feel physically painful.

Listing them out makes me realise how hard it is to keep a track of my daily symptoms at the best of times, let alone to expect my nearest and dearest to begin to understand. So in one of my many “I can’t sleep” moments, I’ve decided I need to make more of an effort to monitor and track what’s going on with my body. I have a doctors appointment in a month and a hospital appointment in January. If I want to be able to tell them anything useful, something more than “yeh, it sucks, but I’m alright” then I have to really listen to what’s going on.

So this blog remains the same, I still plan to use it to ramble and rant and pick out tangled thoughts from my head, but it’ll also include an extra section at the bottom of each post, listing out the day’s symptoms. I hope it goes without saying that it’s not because I’m looking for sympathy, nor am I necessarily looking for advice, but I just need a place to recognise what’s normal, what’s new, what’s a pattern, and what absolutely needs bringing up with my medical specialists. And as an aside, if it helps those of you who spend time with me regularly to recognise what’s going on, then I hope that goes some way to explain my sometimes irrational behaviour or my need for space and quiet. And when I say “I’m fine”, you’ll know exactly what kind of fine I mean.

Today’s challenges: fatigue (after doing the smallest of things), back pain, shoulders aching, cold to sweating and back again, anxious, headache, face pain (sinuses I think), pain in my hands – hard to grip anything, breathlessness. 

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“Caught between a strong mind, and a fragile heart” 

Well today was not was I expected, nor what I had planned, but I feel considerably better now than I did this time last night. Turns out, sometimes I should practice what I preach.

Anyone who follows me on Facebook will have seen the link to my post from last year talking about mental health, and how important it is that we’re not afraid to start a conversation. I received a huge amount of support and positivity, both publicly and privately, and I felt very proud of myself for having been brave enough to share. And rightly so, after all, it’s never easy admitting a history of depression and self harm, but as it turns out what’s even harder is admitting that now there’s a new problem.

But today I did. Rather unexpectedly actually, and as if to prove what an incredibly powerful tool mental health week and mental health ambassadors can be, it was thanks to a conversation about that, that I was able to tell a friend that I was struggling with anxiety. It felt a huge relief to explain even briefly how hard the last couple of days have been, and how illogical the whole thing is. I like reasons and explanations for things, and if there’s one thing anxiety defies, it’s logic. But I went away from our conversation feeling that no matter how bad things can seem, I always have M on my side.

With that, I decided to bite the bullet and be honest with my manager about what was going on. After I’d finished rambling and tripping over my words, she asked me why I was so worried about telling her – she is, after all, one of the most approachable people I know – but putting it into words, spoken ones, not just written, is pretty hard for me. I hate to think that the other person feels they have to fix it or find a solution, or that they might think I’m just being a bit of a wuss.  And of course that’s when I cried.

But crying and fear and rambling aside, I cannot begin to explain the enormous sense of relief I feel tonight. This time last night I went to bed not knowing if I’d even be able to leave the house in the morning, let alone get through a day’s work. Tonight, I’m going to bed knowing that no matter how I wake up feeling tomorrow morning, there are people in every corner of my life, both personal and at work, who will do whatever they can to make sure I’m ok and that, more importantly, when I’m not ok, that that’s ok too. And right now, that’s the most amazing feeling in the world. 

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Get back up and start again 

I lied, I’m back before Winter. I have the writing bug back, and I’m a little bit ill, so here I am again.

I was right, I was on the edge of a flare up. I was just wrong about being on the way out of it. I finally admitted defeat yesterday, cancelled my plans (which always hurts), and slept for about 18 hours solid, only waking up for coco pops and to remember to drink. And for the most part, I feel better today. My body still aches all over, bizarrely my face in particular, which is quite frankly weird and annoying, but I’m able to stay awake today and I’ve even managed to drive for coffee. Priorities of course.

Now I just have to focus on what’s next. If I do what I usually do and rush back into life then I’ll just be back here again in a few weeks. So I need a plan. A realistic one, and one that still includes going to work, since that is pretty much non-negotiable at the moment. So looking at my worryingly busy calendar for the next few weekends, it’s easy to see that I need to be kinder to myself during the week. BUT that does not mean coming home, monging on the sofa, getting pissy that I’m monging on said sofa, and going to bed. That is my fastest way of spiralling into depression, so this is my promise to myself that one night will involve taking the pooch for a stroll, and one night will involve taking myself out for coffee and writing. I have utterly abandoned my writing in the last six months, both on here and the other stuff I do, and I need to get back to it. Along with that, I will shower and change when I get home from work. It’s a little thing, but it’s the best piece of advice my therapist ever gave me, and I really should listen.

So three things. That’s all. Pooch, writing, shower. It’s not much, although it feels like a mountain right now, but it’s a start and I’m stubborn, so I’m doing this. 

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If a year was tucked inside of a clock, then Autumn would be the magic hour…

Autumn Energy

My favourite time of year, when there’s a chill in the air, the leaves turn golden, and I have a legitimate excuse to pumpkin spice everything.

I’ve been quiet for a while, I’m aware of that, but I’ve been looking after myself (for the most part) and focussing on me. It’s felt good to step back, just to work out where I am and where I want to be. I’ve been on the edge of a flare up for a little while, and it’s taken quite some willpower to remember to be kind to myself first and foremost, but I think I’m just starting to come out of the other side, and doing significantly less for a while will probably help.

And Autumn is always a good time for me – it instantly makes me relax, my body aches less, my mind quietens, and I can find moments of pure bliss in watching the leaves fall, while sipping a cup of coffee (pumpkin spiced of course). It reminds me how important balance is – even my calendar kindly reminded me this morning that “You can’t have the ups without the downs”! I’m a big believer in that, and feeling out of balance is akin to feeling physically unwell sometimes, but the in-between times always reset me, and right now, I feel that everything is settling back in place.

So for the next few weeks, if you need me, I’ll likely be supping on a pumpkin spiced latte somewhere, possibly eating ginger cake, wrapped up in a scarf, boots, and armwarmers, and marvelling at how good the world looks at this time of year.

I’ll be back in Winter.

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Don’t believe everything you think 

Today has been stressful. There has been no reason for today to be anywhere near as stressful as it has been, but for some reason my anxiety has chosen this week to sky rocket, and make mountains out of molehills that I’m usually perfectly capable of dealing with. 

But I made it. 

I fought like hell this morning, with my brain and my body. As if I don’t fight my body enough every morning, when my brain decides to join in the fun too, it often materialises in increased pain and discomfort. So I lay in bed this morning, going over every possible way out I could think of. Could I call in sick? Could I work from home? Could I have a complete and utter mental breakdown? Clearly the answer was no to all of those things, not least the latter. For one, I’d let myself down and let the anxiety beat me. More importantly, for my pride and self esteem, I’d let my boss down, and that’s a sure fire way to kick me up the arse. 

So I did the thing. The things actually. The things that were absolutely not a big deal, and which on any other day wouldn’t even have warranted a second thought. And for once, instead of beating myself up over how stupid I was, over how I ruined my evening last night, not to mention a good night’s sleep, I’m rewarding myself for not letting it beat me. So here I am, in a nice hot bath, with a satisfyingly icky peel off face mask, my favourite music playing, and a cup of chocolate milk. Tomorrow brings all sorts of stupid things to worry over, but for now, it, and my irrational head, can do one and let me enjoy today’s little triumphs in peace. 

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