Permanently Exhausted Pigeon

I always see a meme doing the rounds on social media that says something like ‘I’m not an early bird or an night owl, I’m some form of permanently exhausted pigeon.’ This is probably one of those memes everyone can relate to to some extent. But honestly, I cannot emphasise how much this resembles my life at the moment.

In September I landed myself a new job. This was a huge deal for me: after months of drowning in job applications, keen to avoid landing a job in the education sector, I found something I could really get my teeth into. The only catch? It was full-time. And getting my body used to the rigours of full-time work would be perhaps the greatest challenge of all.

Fatigue is a real sucker. Unless you’ve experienced it, it’s incredibly hard to understand. I am one of these people who can sleep for 12 hours or more and still nap for several hours during the day. And no matter what, I am always tired.

It’s generally acknowledged by the medical community that individuals with cerebral palsy use between 3 to 5 times more energy carrying out daily tasks than those without. On an average day, I walk a good 25 minutes during my daily commute. I also make sure to take regular breaks at work, and will frequently get up and go for a little walk around the office when I can. By the time I’ve come home from work and done the usual bits and bobs around the house, I am wiped. Sometimes, I will push through and make a meal from scratch. Other days, I’ll bung something convenient into the oven, or Ben or my family will cook something for me. By 8 o’clock, I am considering getting into bed. I feel bad about this though, so I’ll usually give it til half ten and then consider going about my daily bedtime routine before finally settling down.

Once I am in bed, I tend to do a little bit of reading, before falling asleep ungracefully, probably with my mouth wide open, snoring for all the world to hear.

Next morning, my alarm goes off at 6.45 and the routine begins again.

I’ve had to have a serious talk with myself regarding reserving my energy and managing my pain. I am awful and stubborn when it comes to admitting I can’t take on the world, but living permanently exhausted is just not cutting it any more.

Pacing is something I genuinely want to work on. I need to banish those guilty thoughts and accept that I am not a superhuman. I need to schedule in early nights, make sure I eat good meals and regularly snack on healthy things during the day to keep me going. Most importantly, I need to work on accepting that this is something I can and will work on.

I am enjoying my job. It is the right thing for me right now. Working in an office means I can sit comfortably with a hot water bottle on my aching back, endless cups of tea, with a view of the city around me. I enjoy the satisfaction of seeing a project come together, matters complete and people satisfied and thankful when it’s all over. I enjoy working with people based all over the world and I am lucky to have very supportive, lovely colleagues who put up with my endless yawning and stretching at my desk. I just need to remember give my body and mind the attention it deserves at all times.

I write this whilst snuggling under my heated blanket. My spine has got it in for me today and I haven’t done anything particularly spectacular. But that’s okay. Because right now, this permanently exhausted pigeon is all that matters, and I am going to make sure I spend more of my time with that in mind.

Physios, pain and patience

Well hello, you. I know, I know. It’s been a while, hasn’t it?! I’d say I have a perfectly reasonable excuse, but all I can really say is that old little thing called ‘life’ got in the way. 
I know. Lame excuse. 
Anyhow, just thought I’d let you know about my most recent visit to the hospital. This is following on from my   MSK clinic post, which addressed plans for pain management. I was pretty disappointed;  my beloved acupuncture isn’t on offer where I am now,  and so we decided on a physio/mental health plan.

The appointment finally came around. Though my physio was super lovely, I just felt…well…really underwhelmed. To address the pain the approach seems to encompass a plan for exercise and keeping a record of how this affects pain and/or fatigue, but I am already really mobile considering. I walk a hell of a lot (that’s what not driving does for you), go swimming and gymming when possible,  and at least once a week, and keep active even on my ‘rest days’ as my boyfriend would tell you. I literally do not stop. I am always on the go. And whilst I know some people with pain and musculoskeletal conditions can’t be as active as I am, it just seemed to be an assumption that I don’t do anything,  and so need to increase my activity levels. I was given a few exercises to try and have given things a go, but all in all I just don’t feel like it’s been very helpful. I still have pain even after trying these things,  I still could sleep for days, and I’m still fed up of being told thay exercise is the cure-all even though I do exercise, and lo and behold, I still have cerebral palsy and severe kyphosis.

Sigh.

I am really grateful I got an appointment, and know I am privileged to do so. But I just can’t help thinking this approach is missing the point entirely. Maybe I’m still bitter about not having the acupuncture,  but I just don’t feel this is pain management.  Right now I miss Hull more than ever. 
So, that’s my little ranty update for you. I have a follow up appointment and will mention my concerns. As always, I’ll keep you updated. It’s been quiet on here I know, but thanks for sticking with me whilst I find my feet. I should be back to posting weekly very, very soon
Right, better get back to doing the washing…

Heather x

Disappointments, Direction and Decisions: Visiting the Musculoskeletal Clinic

Yesterday felt like a big, anxiety-inducing, sad-making day.

I woke up early knowing I had to attend my MSK Clinic appointment with butterflies in my tummy and a raspy dry throat. Perhaps it seems a little over dramatic to feel this way, but I’d be lying if I said I wasn’t anxious.

Truth is, I had been waiting for this appointment for months, having had to be re-referred to a different service in a different part of the country since moving back after my university studies. This appointment would determine what kind of support I’d be entitled to back in my hometown, and having got used to the routine and effectiveness of treatment back in my university town, I was extremely anxious at the prospect of having no support at all, which seems like an exaggeration, I know.

You see, it is very much a postcode lottery when accessing healthcare.

As much as I love the NHS, I must say there really is a huge difference with regards to provisions and accessibility depending on where you are in the country. It’s all a bit touch and go with certain services, as each have different approaches. Back in East Yorkshire I’d been lucky enough to receive frequent acupuncture treatment, excellent mental health treatment through several talking therapies, and access to a neuro consultant, occupational therapy and physio. Though I’d seen a physio and neurologist a long time ago back home, I hadn’t ever seen an occupational therapist despite having cerebral palsy. I also hadn’t had frequent acupuncture, or had monitoring of my curvature since the age of sixteen. It made me anxious to think all the fantastic progress I had made in Hull could possibly be stripped away just because the services and provisions aren’t available here.

All of this explained the butterflies and raspy throat, I guess.

As I suspected, things have changed. Much to my disappointment, they don’t offer acupuncture here. This was a little hard to swallow (and accounts for my exclamation of ‘oh no!’ in the consulting room) and though I was offered facet joint injections back in East Yorkshire, I was told I probably won’t be able to have them over here for a few years owing to my age. I might also have to consider a spinal fusion in the future (eek!) so they’d want to reduce steroid exposure to a minimum.

Again, fairly disappointing.

It’s not all bad, though. I will be discussed at their monthly review -‘they’ being made up of doctors, spinal consultants, neurologists, nurses and pain management specialists – and it is likely I’ll be able to access support to help with the mental struggles of the cerebral palsy and scheuermann’s, which is really quite exciting considering this aspect has never been discussed. I’ll also have specialist physio, with therapists who know the condition, and will be able to advise me accordingly, a change from the ‘I’ve never actually seen scheuermann’s in a person before!’ physio I’ve had previously. So, I’m feeling a bit mixed-up about this one. I am seriously gutted I can’t have acupuncture, and will be looking into private treatment options.

However, I am feeling a glimmer of hope, and really feel that the mental health focus will help. It is also lovely to know I am not alone, so a big thank you to Ben for coming with me to my appointment. This is a start, and I have at least some direction, and I’ll just have to hang tight and see what’s in store.

I’ll get there, I’m sure.

Sending warm bear hugs on this chilly day…

Heather x

Pain Management: My Experiences

Hello there. I’m currently writing from underneath a cosy blanket on the sofa. I suppose I have no excuse to be so lazy really, but I promise I am dressed and have made breakfast and have done all the Adult Things that you’re meant to do in a morning. I’m not feeling 100% today, but I’m a damn sight better than I was on Wednesday, so that can only be a good thing.  The sky is blue, the sun is shining and I have the flat to myself so I’m watching countless hours of daytime tv with copious volumes of tea to keep me going.

What I thought I’d write about today are my experiences of attending various pain management appointments. If you’re a regular reader you may be aware that I live with several chronic conditions and a couple of these cause varying degrees of pain. Due to the nature of my medical conditions there are no cures or quick fixes, and so I will have to deal with the resulting chronic pain. Though this takes some getting used to and can be mentally testing, I’m just going to outline my experiences with pain management and the physical side of things.

Some people I know really aren’t keen on the term pain management: they find it patronising, and possibly a little too vague (medical conditions affect everyone differently after all!) but I think I’m okay with it. For me, it took a very long time to accept that I needed help, and an even lengthier time realising that it’s okay to ask for help. Terminology aside, pain management basically deals with reducing the amount of pain one feels on a daily basis, and tries to enable those with chronic pain a better quality of life, including improved sleep, reduced fatigue and hopefully less pain = increased wellbeing. As many doctors have explained, pain levels affect a person’s mental health and outlook on life, and I can completely relate to this. Chronic pain is stressful; it is scary, it makes me irritable, and what’s worse is I don’t know how it will affect me in the future. So for me, I knew I wanted to give pain management a shot.

My first appointments started when I was around sixteen, and involved trialling various pain-management methods to find out which were the ones to provide the most relief. The treatments can vary greatly depending on your condition, but I started out with medical patches – namely a lidocaine plaster – which consists of a sticky patch impregnated with analgesia of some kind that adheres to the part of the body experiencing pain. I didn’t really rate these, so we moved on to alternative treatments, which included the use of TENS machines, capsaicin cream, laser treatment, corticosteroid injections, acupuncture and the last resort: pregabalin.As you can probably gather I ended up trying a lot of things. None of these really did anything for me, which can be really disheartening, I know. But I held out hope. And recently, I’ve found a pain management technique which works and has definitely reduced my musculo-skeletal pain.

So what is this pain-management miracle?

ACUPUNCTURE!

yes, you did indeed read that correctly! Acupuncture has really made my pain so much easier to deal with. And no, this isn’t just like traditional acupuncture; it does have some medical basis to it, seen here, on the NHS website. Although sometimes unpleasant, acupuncture has become an integral weapon in battling the pain I experience on a daily basis, and though this solution has been a long time coming (a whole 5 years since my first foray into the world of pain medicine!) it has really restored my faith in pain management.

Pain management can be an odd thing; it can be unsettling to ask for help, and it can be even more unsettling when things don’t quite go the way you’d hoped. But if you persevere like I did, you might find something that just works for you, or at least, as in my case, definitely helps. Pain management is no quick fix unfortunately but it is there, and I highly recommend you check out what the service has to offer you.

I’m all too aware that this is a slightly rambly-post, but I hope you understand what I mean. Have you tried pain management? And if so, what did you think?

Thank goodness it’s Friday! Best wishes for the weekend,

Heather x

Hospitals, Spoons and the ‘P’ Word

Hello, there. I hope you are having a fantastic Tuesday. I’m currently writing from a room that’s eerily similar to one I occupied in my first year of university (minus the bullying that happened daily…thank god) and it’s rather nice to be back in such a social environment but with less of the stress this time round. This week I’ve been working at a Talent Development Program at my university and it’s been a lot of fun. I’m mentoring a group of soon-to-be undergraduate students and am helping them to complete a presentation on a particular topic. The presentation itself will be assessed by professors of the university, so I can imagine they’re feeling a little intimidated at present (though I know they can do it!). It is a lot of work, but it’s a breath of fresh air to be back in university working with students and my group are all wonderful.

Despite the fantastic week, I have had a fair few appointments/medical emergencies and my spoon supplies are feeling just a little bit depleted so I’m snuggled in bed as a consequence (for the ‘Spoon Theory’, if you don’t know what it is already, head over to But You Don’t Look Sick . It has become a fantastic way for many with disabilities/chronic illnesses to articulate their experiences to those without chronic conditions). This all started on Friday. Things were relatively great until then and I was just about managing to cope with things/have enough spoons to do the things I wanted to. Michael, a close friend from university came over, (he has been working on the same project as myself at uni so came to stay with me) and we spent lots of time catching up, sipping G&Ts and watching wonderfully silly things on tv. It was fabulous…

… until Friday afternoon. We went for Italian food, which seemed innocuous enough. And so we enjoyed pizzas and chatted a while and then strolled home feeling rather content.

Until my body decided it had other things to do, that is.

It all started with itching…lots and lots of intense itching all over my scalp and face, which made me want to scratch my skin to shreds. It all happened so quickly but by the time we got to my flat I was so uncomfortable I tore off my clothes and desperately hopped into a cold shower. Nothing was alleviating my skin and by this point I was covered head-to-toe in a violent, angry, itchy white and red rash. Nothing escaped; it was all over my back, my chest, my legs…and maybe unsurprisingly, I began to panic. I became dizzy and light-headed and by this point I was running around the flat naked (I know, poor Mike!). We took the decision to ring an ambulance as soon as I found I was struggling to breathe and the paramedics burst through the door to me, completely stark-naked, struggling to breathe in a heap on the floor. It was probably hilarious.

Turns out I had a severe allergic reaction, although I’m yet to find out what it was brought on by. I was given a strong dose of anti-histamine by injection and was offered to be taken to hospital. I politely declined and thanked the wonderful paramedics for all their help (whilst apologising for my initial lack of clothing…im never going to live that down, am I?!) and that was that. it was over almost as quickly as it had started but I have been strongly advised to go for an allergy test.

Not only that, but yesterday I went to see a consultant neurologist for my hemi. The fabulous news is she’s referring me to orthotics, physios AND an occupational therapist, which I’m absolutely thrilled with and I’m hoping they’ll all be able to relieve my pain/help out even if only slightly. it would be a fantastic help to the quality of my life. Today I went to my weekly pain management appointment which was painful, but I am starting to see results in terms of muscular pain so I’m willing to put up with the short-term pain for now.

Tonight I have been thinking, and I’m just beginning to realise that this will probably be the way things are for a while this year, but I think that’s okay. I know I shouldn’t feel guilty about receiving all this treatment but I do, I really do. Sometimes I sit and think that I make too much fuss/that I shouldn’t be feeling the way I do because, although I do struggle with pain and hemi and MH and everything else, I am so SO lucky to have been given a life like this one. I guess it’s okay that there will be hospitals and things probably for the rest of my life, and I need to understand that I’m entitled to that. Really it just makes me feel hugely fortunate to have such wonderful healthcare available, because I honestly can’t fault any of the care from my recent appointments. I don’t really know where I’m going with this post, but I felt like I needed a good old talk about things. I think tonight i’ll just stay in bed and wind down.

Hope you’re having a great Tuesday, whatever you’re doing.

Heather x