Monday, 30 January 2017

I've moved to wordpress.. find me here

I wanted to do more with my blog and get my resources together in one place so I could truly share what I've learned.

I'm starting out here

Come join me!

Saturday, 28 January 2017

Falling apart with grace - applying lessons learned

I need to take my own advice more.

I have spent this week sliding into a depression and physical health slump, and being aware of it, but doing nothing to help myself. 

I've recognised the signs, can see where I need to make changes and.... I've just tried to ignore it. 

I know that ignoring my health isn't a viable option. It's the only thing guaranteed to send me back to that place where I couldn't leave the house because my physical health was so bad, or couldn't get out of bed because, well, what's the point? 

I talked in my last, rushed and incohesive, blog post about how I've cried two Saturdays running and why, but I still haven't done anything to cut down on my stress levels other than try to breathe through it. 

We had our monthly meeting at work today, and for the first time in a long time, I felt the creeping feeling that I'm just not good enough. The feeling that, no matter how hard I try or what I do, I'll never be enough. Now, this feeling isn't a product of that meeting, or of external pressure, so much as it's a sign, symptom and warning of my disease catching up with me and my adrenaline (as well as my imposter syndrome) going into overdrive. 

I know, objectively (and hopefully without sounding like a total tosser) that I'm quite good at my job. I've even been been given flowers and beer by my employer to show that I'm appreciated. Reminding myself of that doesn't really help. I still feel like I'm failing. 

I'm failing at having a life outside of work and at doing all of the things that make me happy. I need my 'spoons' for work. I went out on Wednesday night, not to a nightclub or to play sport, but to watch an academic talk by two lawyers and a professor of criminology. I was uncomfortable during the talk, and completely fell to bits (literally.... joints out of sockets and crying) for the first time this week when I got home.

I usually cope fairly well with this, reminding myself that this is the stuff that makes the rest of my pain bearable....that I remember how bad it can be and am grateful that it isn't. I usually get by very well, breathing and melting into the pain, feeling all of it and trying to notice where it's worst so that I know where to concentrate heat or ice packs.

This time, I've not really recovered. I drove to work yesterday morning, even though I probably shouldn't have and ten minutes into my journey, I started  to cry. I cried silent tears for the rest of the hour long drive. Tears of pain, tears of sorrow and of loss. I haven't felt sorry for myself for a long time. Years maybe! I try to remember, always, that without my hypermobility syndrome, I'd be likely to be dead or paralysed from the car accident I had when I was sixteen, where I broke my neck but went back to school, almost fully functional, after three weeks.

I feel guilty for feeling down. I feel a bit ashamed that I feel bad about it all when I've recently spent time telling off a friend who was feeling forlorn about her health. I feel as though I need to breathe and plan and find solutions, but that I just don't have the time or energy. 

I've never had to find a way to build myself up and make changes without hitting rock bottom before. I've never been in the privelidged position of knowing my body and mind well enough to identify where I am in the cycle of my condition to be able to see that I'm in a spiral. 

I've never felt so helpless. 

The paradox of knowing in advance that I'm going to fall apart so badly that I can't put myself back together again but not being able to fix myself is compounded by nobody in my new place of work ever having seen me at my low points. I've only been here a year, and it's been a year of plentiful health. I've been on a high. It's hard to ask for help when people can't see how well you're doing. When you see a failure, and all they see is how well you cope. 

I know what I need to do, but not quite how, or when I'm going to do it. 

I need to work on pacing, like I did at the beginning, now that my circumstances have changed. I need to ask for help with my energy levels and traffic, work, my outside of work commitments and my family. I need to ask for understanding and to work on my own empathy for myself. 

I've got a support network outside of work that can help me do this. My friend Vic, whose blog you can find by searching for 'stick girl Vic' on Facebook, is great at all of the same advice as I am.... as long as it's for other people.  We could help each other, if I wasn't so rubbish at making myself vulnerable. This is the closest I've ever come to honesty about how I feel  about myself, and I'm not sure how much more I could lay myself bare. What I am sure of is that I couldn't be this honest with anyone face to face and how much help I could bear to take. 

I read a book recently (I say read, but I can't read any more as I fall asleep, or can't concentrate, so I now listen to books using Audible) called 'The Art of Asking' by Amanda Palmer.

It geared me up to ask the hard questions I haven't been asking myself. It made me realise that, when it's going well, I lie to myself repeadedly about how capable I am, and by extension, I hide from the world, and myself. I have always been an achiever. It's one of my personality traits. It used to be an asset, but it's become somewhat of a burden. As much as I've pushed friends to ask for support and advocated for people to have the things that they need to keep going, I've hidden from it myself. Asking for help makes me and frustrated, it makes me cry and shake and it makes me physically ill.

After writing most of this blog in a flurry of self pity yesterday lunch time. My boss asked me how I was feeling whilst we were both walking towards the tea point after lunch.

What felt like an hour later, but was only a few minutes, everything I've written here so far was out of my mouth and she still wasn't looking at me with anything other than understanding and empathy. I had a whinge at my colleagues in the afternoon, being more honest than I feel I ever have been about how my physical health affects my mental health and vice versa, and my boss came back to me later in the afternoon with some suggestions on helping me to cope with my current workload and reduce my stress levels. I am hopeful again.

I'm going to make some space in my life over the next few weeks to consider my long term plans and put some safeguards in place to help me when I get here again, but right now, I'm hopeful that this is my turning point and, no matter how scary it is to realise that I'm not ok, I'll never have to start from the very bottom again.

All the spoons,

Dawnie. X

Wednesday, 25 January 2017

Booze, biscuits and pelvis problems...

I am so happy to have found some sugar free chocolate chip cookies that taste like actual biscuits in the past couple of months.

Generally, my sweet tooth is so much better after a few years of being largely sugar free, but after a teeny Christmas lapse after not being able to resist the Christmas pud, I have had a few cravings.

Diet is going to have to be a real focus of mine this year. I am more than happy with how I look, but the hospital has asked me to try to lose a substantial amount of weight to avoid a hernia, due to the size of the scar from my gallbladder surgery in April. I'm cautiously trying to increase the amount of Pilates that I do, looking for classes to help, but am acutely aware that I've just finished a long dialling back of my physical activity because I was doing too much and getting ill...

I've decided to cut out sugar completely, as my diet was before Christmas. I'm happier without sugar and much more able to control my pain levels, fatigue and mood. I also want to try to cut out meat as much as possible. Partly for health reasons, but mostly because farming practices make me feel very guilty.

I've got a podcast lined up to listen to about Sugar replacements, which I already know is going to turn me off them.... maybe I'm trying to change too many things at once? Thinking needed.

In general, managing my health is going well. The more I try stuff out, the more I learn and the easier it gets.  It does sometimes feel like a full time job to stay upright though!

The last few weekends have been really hard. I've been fairly busy at work and in life, and it's meant
that I've been producing lots of adrenaline and cortisol.   Whilst this had been great at keeping me

going during the week, I've started to have weekend attacks of anxiety, panic and falling to pieces (literally) with my HMS.

As well as recently learning that my pelvis has decided to join in with my ball and socket joints and become hypermobile, I now know that my weekday stress is probably causing my painful weekends.

After a particularly 'melty'meltdown a couple of weeks ago, where I swore at my (lovely, supportive and generally wonderful) other half, then cried for an hour for absolutely no reason ,I spoke to my GP. I sometimes find it difficult to manage my anxiety and I wanted some advice. I don't take specific pills for anxiety as my pain melds (gabapentin) usually stop me from having full blown attacks.

He explained that the link between anxiety and HMS is now fairly well known, and that it isn't necessarily an anxiety attack, but my HMS catching up with me.  If you want to , ow more about the relationship beteween anxiety and hypermobility, I found this really useful

I've dialled back my social life again and am trying to find a balance where I can leave work at work and not take it home with me in my brain.  If push comes to shove, I might need to look at e hours I wrk or ask for help, but right now.... I have a plan.

Dry January is also going well.... there was a particularly difficult trip to the pub last weeken, where my favourite (and rarely stocked) drink was bought as a round.... up I managed t get a soda water with lime instead. Being booze free is also working for me..  I've lost 1/4 of a stone in 3 weeks, but this might also be the weight I've gained over Christmas!

I've gotten heavily back into songwriting and crafts.... stuff I can do by myself, in the quiet and give myself some space. As I now need to use my stick all of the time, I'm using this craft time to make a selection of 'pretty sticks' that I can accessorise outfits with in the same way as others can choose pretty shoes (I rock my Docs every day.... they're much prettier than orthopaedic shoes, but not necessarily the most widely accepted footwear to pair with a little black dress....).

Songwriting has really helped me to get some of my thoughts together and do some soul searching. I
feel like I know myself a little better now that I've got a 'theme tune'!
I'm using GarageBand and writing lyrics, which I hope to share with you  all soon.

One of my biggest goals for myself is to be more open. I've always been 'too honest' and I've tried hard to fit in with people's expectations for what we share. I've realised recently that this doesn't make me happy. I'm an open book, but I've been hiding the bits of myself that I'm not sure that others will like. I'm not going to do that any more. I want to be seen. Really seen. Not the bright hair and the dreadlocks, but who I am.

I'll check in again next week wit an update on my new sticks, with pictures! And info on how the health kick and anxiety management are going!

But for now, it's goodbye from me.

Please feel free to comment. I'll try to reply when I can. I'm also on twitter as 'dreadlockdawnie' and love hearing from you. Suggestions about hyper mobility or how to manage chronic health are always welcome and if you're struggling and need some help, I'm getting pretty good at this. Please give me a shout.

Much love,

Dawnie xx

Sunday, 8 January 2017

Dreadlocks, Dry January and starting again...

It's been a long time since I posted and a lot has happened since I wrote that last post in the summer.

I'm happy to report that, apart from Christmas, being sugar free has been going well and that I've maintained my physiotherapy, which means I've been able to cope much better this year than any winter before. Let's see how that all helps when it get so cold next week!

I was inspired to write a post when lots of things started happening at once for me.  I've got quite a chaotic brain and I find reflecting in writing really helpful. Eventually, I'd like a decent stylus so that I can actually write to you all instead of typing. I'd blog for hours if I could use a pen.

This month is traditionally the month of new starts, new ambitions and plans and new promises to yourself, but I don't have any. Instead, January this year for me is all about following through on old promises. I need a routine. I'm already doing the million things that I want to do. I'm doing them poorly. Without organisation, I hop between hobbies and passions like nobody I've ever met. It's hard for me to focus when there are so many things that I want to learn and do, but so little time that I am productive or receptive outside of work because of my health.

Since I last posted, a lot of my time and energy outside of work has been about helping myself to feel better and I have concentrated on getting to know myself well enough to know when to go home, say no, ask for help etc.

I've stopped caring about how you feel about me. I've gotten a little older and wiser and realised that I have no control over what other people think. I no longer apologise for the things that I can't do and
stopped worrying about whether you believe me or not. I don't have the brain space anymore.

What's changed? I have filled my brain full of life. My head is full of the people I love and all of the things that make me happy. Now I need to sort them all out, as there're so many nice things, that they're now all jumbled up.

I'm going back to basics. This month I'm concentrating on 5 things, and although they may seem like cliches. As well as being the right time for me to do them, it's also a great time to do them with support. Everyone is getting fitter and dieting, so at least I'm not alone.

So, here is my first update of 2017, and my 5 Focuses for the new year.

1. Get more exercise

I know, I know... 1 and 2 are both going to make you groan, but I need to up my game. I'm now doing some core strength exercises every morning, which is helping my Hypermobility and background
pain levels, but I've recently developed some hip pain (Dr thinks my pelvis is becoming hyper mobile) and need to start doing more walking whilst I still can. There are things I want to see standing up! To get to the point that I can comfortably walk without a stick, I've got some supplementary physiology appointments booked and am planning to join a real life Pilates class. I've found a couple in my area and am going to make enquiries on payday. Until then, it's a daily YouTube core strength Pilates class before I leave the house.

2. Eat better

I told you it wasn't going to get adventurous any time soon! I got a Nutribullet for Christmas and have been making daily smoothies to help me get more nutrition. I also subscribed to Gousto so that I can
eat better. Although I'd love to cook, that's all on my other half as I'm a bit useless at it, so 3 nights a week, we use the pre-measured ingredients and recipe cards to make it a bit less arduous and a bit

more fun. We've tried some gorgeous stuff so far and it's better than takeaway!

3. Learn German

I've been learning German on and off for a couple of years, and I understand enough to watch a soap opera or a kids' cartoon. Duolingo reckons I'm 27% fluent (not sure how that works) but I can't hold a basic conversation. This year, that's going to change. I'm going to Germany again in the summer, and I'm determined to be able to find my way around and contribute to conversations rather then just understand them.  I've got the Duolingo app and am watching and listening to things in German fairly regularly, but I'm changing it up now that I have Bluetooth in my car and am going to start listening to my Audible books in German (I'm halfway through the first Harry Potter in German) so that I can be a bit more immersed. Tips welcome!!

4. Do more stuff

I've talked before about how I slowly withdrew from life a little bit but I've been trying out different things to get me feeling good about myself again. In 2016 I tried (and failed) to commit to weekly rehearsals for an operatic society and the course that I enrolled on with real life people... cancelled. Not being able to commit to a regular schedule has hurt my confidence a bit,  it I've thought of solutions. This year, my ambitions are to learn how to use my new iPad and recording software to start writing music again, to pick up where I left off learning guitar and to start using my craft skills for something useful. I've had a design in mind for a custom walking stick for a while and eventually have the stuff in my Amazon basket to start making it. Updates to follow.
As well as doing more stuff to make myself happy, I'm making a return to looking like I did when I was happy. It's almost two years since I chopped off the dreads, but last week saw the birth of tiny Dreadlocks. They're still just loose tats at the mo, but the idea is that these one should will be thinner and looser for longer, stopping me from having too many problems with heaviness and heat until further down the road, and I love the way that they look so far. Follow their journey on Instagram!

Finally, number five.

I'm doing Dry January. I never thought I would and, after being sober for the first three months of every year when I was regularly taking opiate painkillers, felt as though it wouldn't really do anything for me. I'm a week in and didn't realise how much I was drinking until night 3. I'm more awake on an evening, but I feel better for it and am drinking more water as a natural side effect. It's made me feel like I want to be healthier if nothing else, and if you want to, you can help motivate me by helping me to raise money for the Hypermobility Syndrome Association here;

Thanks for reading this time, and i promise I'll be back next week with an update.

Dawnie. X

Sunday, 19 June 2016

Getting fit.... is it worth the risk?

For a while now I've wanted to get fit.  Never one to do anything halfheartedly (unless it's housework) I've struggled with an 'all or nothing' approach to physio, setting goals and feeling defeated when I couldn't stick to my routine.  

I've always been a big lass - a size 22 at my largest - and when I was younger, I tried all approaches to weight loss (sensible and good, restrictive and dangerous) and never really managed to be find a happy weight. 

I've found that the happier I've become with who I am and how I look, the easier it has been for me to control my weight and that the more successful I've been at losing weight, the more motivated I have been to get fit. 

Great right?

Well, the downside is that it took me a long time to get to a place where I din;t feel guilty for resting and, for the last three years I've managed to find myself in a place where I am happy, able to get on top of a physio and diet regime that supports my health to be the best it can be and I'm able to rest and invoke my self care routine whenever it is needed.  

I started this blog to talk about my progress and share all of the wonderful ways I'd found to make my life a better place to live.  

Now I find myself in a place where, after recovering from a fairly major operation (I had an open cholecystectomy and bile duct recontruction 7 weeks ago) I have restarted a physio routine and m itching to 'get good' at the activities that it contains. 

I have to do physio.   Without it, I am unable to walk without crutches and, on a bad day, unable to walk with crutches as they dislocate my shoulders.  Without it I feel helpless and at the mercy of Hypermobility Syndrome, controlled by the relentless fear of falling apart in public.  Physio helps me to control how often I dislocate, gives me a good feel for my body and capabilities and helps me to feel like I'm doing something to help, which has had a much bigger impact on my emotional and mental health than I ever anticipated. 

I can't afford to go back to the days I remember from before I had a routine.  I remember (blurrily) crying at my desk because driving to work was just enough to push me over the edge into being too ill to work and too ill to drive home and of sitting in A&E on an often more than weekly basis because I couldn't put one joint back without popping another.  I never want to feel like that again.   I am not helpless.  I am not a 'victim' of my condition and I refuse to struggle.  If I can't I won't, but I need to get back to being able to feel when that is, and to do that, I need to do my physio. 

I spent hours over the time leading up to and recovering from my operation and have put together a routine that starts with the very basics (bending down and standing up) and builds back to where I was before my operation, with my amazingly strong core to lend strength to my skeleton in the absence of the collagen that I don't make properly. It gave me something to do to keep hold of that feeling of progress and ward of the helplessness, but it also triggered something in me that I'd managed to push away. The ambition to be really good at this.  

I'm not very good at being bad at things. I was never the pretty one or the cool one or the one who could make friends easily.  I was clever.   I wore it like a badge.  It was my shield when I was bullied, even though it was part of the reason that I was a target. I know that this is the reason I struggle with failure and hate criticism.  I'm so bad at accepting criticism that I can't really admit that I'm bad at taking criticism.   I can recognise it when isolated, but when it happens, I'll bite, I'll become defensive and I'll brood for weeks.  I can't help it.   Believe me... I've tried!

That makes being bad at exercise a weird place for me to be.   I have never been good at exercise and PE was a genuine fear.  I struggled with anxiety at school and tried everything I could to get out of PE, where I was mocked by kids and teachers alike for my clumsy, thudding run and frequent falls.  Eventually I gave up entirely after convincing the performing arts staff at my school to allow me to book a practice room and rehearse my trombone or sing instead of attend PE.  My Mam (I'm very Northern...) wrote me a note every week and I retreated to my solitude in a room overlooking the school yard to play music instead of run. 

I used to dance as a child and as a young adult.   Tap, ballet and stage dancing were a huge part of my week and I was genuinely good at it.  I've got good hips and a really good sense of rhythm and it didn't matter that I'd hurt tomorrow.  Dancing felt good. 

As I got older, dancing got harder and I gave up lessons and exams and only danced for fun.  I gave up 'clubbing' at 18, going into twn with friends and making my excuses before the dancing started.  Dancing had started to hurt.   Not tomorrow.  Now, when I was doing it.  The only form of exercise I had ever enjoyed was gone and the party girl who only left the dancefloor to get a drink was broken. 

Not doing any exercise and being openly proud of it became my new wall.    I could pretend that I didn't care about my lack of movement and crowed about how silly all of my friends were with their diets and gym subscriptions.  'I'll just be here with this massive bar of chocolate' I laughed at them as they went to another 6am gym session. 

Well, now I need to find a balance.  I am always going to be 'bad' at exercise if I measure myself by the standards let by others.  I am disabled.  I walk with crutches and I can't lift things.  I dislocate joints at least once a week and I fall over often enough that I was only allowed home from hospital because my partner had a week off work.  

I have spent time planning a routine as I need concrete goals (I'm an 'achiever' according to a test I took at work.   I need to feel like I've conquered something every day.) to achieve but not the ones found in traditional programmes, because they're not realistic.  I've had to set my own. 

I've started my routine and I need to start chronicling it.  If I write about this and you all read it, I won't be able to fail.  The way that my nature works, I'll have to do this right.  I need to know that there's a price to pushing myself too hard other than just my own downfall.  I need to know that someone is watching.  

I can't push until I break, or I won't be able to continue. For me, the point of this journey is not to get 'ripped' or look differently to how I look now (I am a happy size 14 at the moment with curves and a giant smile).  I don't want to move mountains or win any competitions.   I want to be well enough to walk to the corner shop.  I want to be well enough to make plans with my friends again and be 80% sure I'll be well enough to follow through.  I want to feel good about looking after myself. 

I have given up sugar again (I gave up fructose around 2 years ago and it made a huge difference to my hypermobility.   I'm just as stretchy and bendy but I swell up less and my pain levels never get to 10!) after a temporary burst of sugar consumption whilst I couldn't plan meals myself and have started some gentle core physio three times a week. 

To make sure I don't push too hard or do too much outside of my physio routine (when I plan exercise, I have to plan to reduce my general daily activity or the constructive exercise can push me over the edge and into a run of days where I am tired, sore and unable to participate in real life - I like to avoid these days as often as possible), I have bought a fitness tracker.  I use mine differently to most people and instead of pushing myself to do more, my Misfit Flash is there to tell me when I've reached the edge of my limits for today. 

I've talked before about how I make extra adrenaline due to my condition.   One of the upsides of adrenaline is that I can keep going even when I'm broken.  The downside is that my body doesn't tell me that I should be resting until it's too late.  

I chose my fitness tracker as I can set my own goal, as low as I like, so on days that I wake up sore and broken, I can set a low goal and my watch will flash when I should stop / slow down / stop actively doing things.  This is much more helpful that I ever anticipated and has especially helped with days out so far.  

I'm going to keep my journal going and am hoping to be able to write a post every week about the week gone and set out my stall for the week ahead.   

I'm hoping for comments with tips and ideas from those of you who have a successful routine and questions from those who want to steal my ideas for their own.  I'm adapting things from lots of sources and building upon having done this once already.  I've started with kicking fructose and starting gentle core pilates sessions 3 times a week, on my own, in the living room.  I do these when I get up, so that I can guage how much I can do during the rest of my day (it's too easy to spend all of my spoons and have none left for physio when I get home) and I'm starting to look for a swimming pool with steps (not ladders) that is local to me for phase two. I have completed a Nutrition and Health Level 2 course to help me to plan my nutrition and am planning my social and hobby activities to support my ability to stick to my physio routine. 

Thanks for reading.  This is a longer post that I meant to write and isn't as in depth as I wanted it to be on the nitty gritty of my routine.   Tune in next week for a breakdown of what I've eaten, how I've managed exercise and how I'm feeling about this and life in general and thanks for helping me to Build a Dawnie from the ground up all over again! 

Wednesday, 9 March 2016

Spoon saving - starting again

I've got about 3 spoons left before I start 'borrowing' from tomorrow...
Borrowing is a bad idea becsuse, like financial loans, they cost more to pay back. I need tea (Mal's made a hotpot coz he's awesome), a bath (I'm sore and a deep heat bath (My friend is my hero for suggesting this. The aloe heat gel she sells is amazing in the bath!) would go a long way to helping me sleep. I need to get changed and take off my shoes. I need to get upstairs and I'm wasting a spoon on Facebook and reading blogs (I'm not using spoons to post on groups and blogs - except this post- because wording stuff properly is important and fightinng brainfog is like, double spoons) I'm really lucky to have an 'other half' who understands, helps and never makes me feel like I,'m not pulling my weight.
I'm almost 30 and there are loads of things thst I really want to do. I want to learn so many things but I've not got enough spoons for any of them st the moment.
I'm trying to unlearn being 'normal' and try to find new ways of doing things to use less spoons.
Some friends posted the burrito method for duvet cover changing and I'm (sadly) genuinely excited that I can do silly things like decide to 'treat myself' to fresh bedding on a whim, and still be well enough to enjoy it.
I keep a bag at the bottom of the stairs and when I need to take things up so that I can do it in one trip when I need to go up anyway (for the loo or bed)
I have no shame about the different ways I do things (crawling up stairs when required, sitting cross legged on the floor at every opportunity etc)
It makes a huge difference to me and I'm starting to get a tiny spoon collection to 'spend' on being me and living, rather than surviving.
I want to find ways to spend less spoons on the things I have to do so that I (and anyone who wants to copy) have more spoons for doing the things that I want to do.

Help me try new things!! Any suggestions for disability life hacks are welcome. 
Please forgive my typos. I'm not proofreading. ☺

Sunday, 14 February 2016

Asking for help is the opposite of admitting defeat

I had a great day out on Sunday.  

I went to Tynemouth Market (an amazing Sunday market!) with a friend and then met up with the girls from my old job for lunch before coffee with one of my favourite people.  

On the night time, I had a bath and curled up with my other half.  

It was a perfect Sunday. 

The reason that it's blogworthy is that it's the first Sunday in a very long time that I've made plans to be in more than one place that isn't home and the first day out I've had in a long time that I didn't plan a rest day afterwards.  I was a little bit worried about it in the planning..What if I was too ill to go to work?  Would I really feel right calling in sick because I did too much?  If I had to call in sick because I'd had a bimble around the market, would that be the same thing as ringing in sick because of a hangover?

In the end I decided that sometimes, having a life has to come first and that, as I'm not always going to be able to control when plans are, I need to find ways to control the plans as well as I can so that they don't impact on life too much afterwards. 

It's taken me a while to get the courage to plan in more than one thing in a day.  I try to limit my plans so that I don't wipe myself out (it's very tiring walking on wobbly legs and having things hurt) and I've done really well over the last two years at building up my 'event days' so that I can manage one fairly normal weekend day and a rest day. 

I already had plans to go for lunch with the girls when a friend at work said they were going to Tynemouth Market in a week's time and I invited myself along.  I'm a bit rubbish at letting new people into my life outside of work and worry about them seeing me at my most vulnerable.   The idea of having to ask someone I don't know very well for help is terrifying, but this girl has been great and really seems to understand chronic illness.  I felt comfortable enough to give it a whirl. 

I planned where to park my car so that I didn't have to walk very far and where there were seats around the station in case I needed to stop.  I planned my outfit in advance so that I had no buttons or zips and didn't wear jeggings (I sometimes lose the strength in my hands and can't pull them up!).  I planned what to pack in my bag and which tablets I should take and which to leave at home.   I decided on crutches rather than a walking stick as they give me more support and more options for managing my day, though they reduce my ability to do other things, like drink and walk or eat yummy market things.   I decided it was worth the sacrifice to make sure I could last all day.  After a final check on where the loos were, I was all set. 

I got up and followed my normal morning routine (check shoulders, hip and knees, relocate any stray fingers and then get out of bed) and rigorously followed the plan I'd made.  I wore gloves to make sure my hands were ok with crutches all day and made sure I had deep heat with me and I factored in all of the tiny things.  The biggest change I've had to make to my life to help me to manage my Hypermobility Syndrome is that I now plan everything meticulously, whilst at the same time leaving enough flexibility for me to adapt plans if I need to.  I plan the things I'd never have even thought about before, like where to keep my money and phone (bra) for easy access and security and whether to wear shoes that need me to tie the laces... 

At the market, I managed to get parked as planned and I had to ask for help to put things in my bag and with carrying bits when I bought stuff but I had a great wander.  

My friend had been the week before and scouted out a stall to show me.  After trying, falling in love with and buying some cashew nut butter from a van (which I'm currently enjoying as a sweet evening snack!) we walked over to a stall covered in amazing things made out of spoons.   I was absolutely spellbound as I looked at rings, bracelets and keyrings with pretty engravings and funny slogans.  You can find out more about spoon theory for managing chronic illness here;

I was amazed that The Spoon Man ( had never heard of spoonies.  I hope he checks it out online.  I'd love some motivational spoons!

I'm glad I took my crutches and I'm glad I asked for help.  I had a full and lovely day... and the planning meant that I didn't run out of spoons either!

So as I sit here recovering from walking too far, drinking too much and not doing enough planning yesterday, I am comforting myself by remembering a better planned weekend last week.  I can do this.  I have proven it.  I just need to make it my normal.