Learning to exercise in a way that works for my body - with it's hypermobility and autonomic dysfunction - has been life changing. A key part of this has been to adjust what I do according to my symptom levels - especially fatigue and coordination levels. In practice this means: Before doing any exercise, testing out some familiar movements and seeing how they feel. I usually do a bridge or two for this - and if it feels really wobbly and hard to control when it should be easy, that's my warning that my body isn't ready/capable of that right now. If they feel strong, I'm good to go - and if I can get a few good days in a row I make progress. (One of my main unstable areas that muscles have to compensate for is my pelvis - hence my test movement is one that gently tests/activates that area) Adjusting my expectations around known fluctuations (e.g. premenstrual = much less coordinated = more lying down/non weight bearing, and slower, and lower resistance exercises) Being unafraid to take days off when needed, where instead of the ideal routine, I might just do a few really gentle, slow, low resistance movements to ease any muscle ache. Adjusting what position I do exercises in as needed - on a PoTSy day, or a hot day, focusing on lying of sitting versions of exercises rather than standing versions. Proper exercise sessions when I can do them are good, but doing little and often is also good. A couple of whole body movements in breaks between laptop work really helps my PoTS as well as strengthening my joints and easing stiffness and pain, but is MUCH more manageable when my fatigue is moderate. Exercising whenever works for me - I'm usually a morning person, so getting up and doing some exercise first thing is good. Except when it isn't! Sometimes I get up and my PoTS symptoms are severe - then eating and hydrating, and going back to bed for an hour or two is a much better option. Often when I do this, I can exercise later when my symptoms have calmed down. I do best with a routine for the day - then I'm less likely to forget to exercise - but can't always do the same routine, so I've learned to have several different routines that I can chose from to match the day's demands, and my physical needs. A post exercise snack and lie down helps speed recovery, (I was greatly pleased to hear that elite athletes often do exercise - eat - rest routines too.) Me on holiday doing an ankle exercise in sitting with a resistance band - that I usually do in standing using body weight, standing was too much. The result is that I rarely do the same routine for more than a few days in a row - but I do exercise in some form most days. Overall this has had a very positive impact on my health. (Note: This should not be taken as a list of instructions to follow as it is what works for me - what works for other people will be different. But hopefully in sharing some of what works for me it will help some other people to find what works for them, and maybe also validate the experience of other people who can't exercise consistently but do what they can.)

The other day I did a classic self-management fail. My neck was niggling slightly, and I knew I was probably aggravating it a bit with how I was lying, but the rest of me was comfortable, and...well...it wasn't that big a deal. Only: It WAS a big deal. By evening I had horrendous head and neck pain - to a throwing up level. So I had to activate all my coping strategies - lying flat on my back, with heat packs, and gently massaging my neck when I could, and doing absolutely nothing in the dark for hours - while unable to sleep. It was, quite frankly, a horrible experience, and although the acute pain faded by the early hours of the morning, I'll be fragile in that area for a few days yet. In a way, this was self inflicted. Not deliberately, but by getting complacent with my posture management. My symptoms had reduced, so posture management strategies had gently slid down my priority list without me noticing, I made a poor decision and completely failed at self management. And now I had to deal with the consequences. When we're in the consequences stage, the default reaction is often self-blame, guilt, and beating ourselves up for being so stupid. This approach has big drawbacks including: a) increasing stress - which can worsen fatigue, pain, muscle tension etc. b) worsening mental health c) making it harder to recover d) it demotivates us for the next steps (I'm such a failure! What's the point of even trying?) However, the reality is that this is a common part of human experience - we do things, and when the consequences hit, we can see, with hindsite, that we should have known - or did know, and should have remembered/taken it seriously. So I've been working hard on a gentler response. a) To accept: yes, I messed up. b) To acknowledge: That messing up was totally understandable, and part of being human. - and forgive myself for it. c) From that gentle acceptance of my mistake - to make some practical decisions on what to change in the future. Not out of self-hatred, but out of recognising that I can do better - and that is a hopeful thing. And so: onwards and upwards. And lying in that position to look at my phone is banned for the forseeable future.

One of my most used 'accessibility aids' isn't designed for disability at all - it's a simple across body bag for a smart phone. For me it is incredibly helpful because: I can carry my phone with me all the time without needing to use my hands, or having to keep taking it out of a jeans pocket to sit down etc. This also means I don't need a falls alarm as I will always be able to call from my mobile if needed. I often switch between walking/standing and wheeling. Without the bag, when wheeling I put my phone on my lap - and then, of course, forget when I stand, sending it flying. With the bag - nothing happens! I just keep my phone without effort! It has no zip - I really hate the sensation of touching zip teeth when trying to get something out of a bag! I can fit my phone plus my pack of keyring cards in it. It's too small for much else, so my phone never takes hassle to find. I have several in different colours and designs so I can match my outfit/mood. There are loads of different designs available in Etsy, and I saw some the other day in the 'Market for Kindness Community' - an online craft market on Facebook, supporting people with disabilities. You can find it here: https://www.facebook.com/groups/kindnesscommunitymarket/ (Note: I'm not affiliated with or doing a paid promotion for either,, although I sometimes have a virtual stall at the Kindness market)

Recent changes to tariffs and shipping rules unfortunately mean that overseas shipping is no longer viable for my business. I have decided that the best way forward is to create downloadable versions of our disability keyring cards - at the moment something like these - as A4 pages with one or two cards on the page. (Note: the maximum number of cards that will fit on an A4 page, and still be printable at the right size is two ) The suggested prices are: £1.50 per page - usually there will be 1 card (front and back) per page, but sometimes there will be two - for example where they are very simple designs that haven't taken much work. The same file could be used by the immediate family (in this context meaning parents and their children can print cards from one file purchase, but not the parent's siblings, or the grandparents, or friends), and they must not be sold or shared outside this permitted use, in any form. What do people think? At this early stage I am very open to suggestions. I'm planning to start creating the download files on Monday 7th, which means I will need to finalise some decisions by then. One important question is: the drafts above have the instructions on them. But I realise this is going to use up a lot of ink if you print lots of cards! So what do you think of having a second download with the instructions on? That way you can download it if you want - but you never have to print it. Planned timescales and process This is a massive project for one person! Not only do I have to create over 400 download files, but I also have to update the website - adjusting download policies and shipping information as well as creating all the new products on the website (unfortunately on my site I can't have a download as an option within a product - I have to create them all separately). Realistically it's likely to take a 2-3 months. But rather than waiting until everything is done, I have set up a 'download zone' section in the shop, where all current downloads can be found. The cards will be added here as they as they are created: https://www.stickmancommunications.co.uk/downloadzone If you have any cards you particularly want to be able to download, please let me know (by comment, email, or social media message) - I will prioritise creating the downloads for cards I know people are waiting for.

When it comes to disability, there are many people who want to be supportive and inclusive - but don't know how. "When should I help a disabled person" is probably one of the disability questions I'm asked most often. The answer is actually quite simple: Do they look like they are struggling/actual.ly need help? If YES: In this context, am I probably the right person to give help? If YES Ask if they want your help. If YES - go ahead and help. If the answer to any of the above is NO - stop. Your help is not needed.. Let them get on with their lives. Without comment or stress. Always offer calmly and respectfully - and accept any no without judgement and without defensiveness. Let's take a few examples from a recent trip to Scotland The hot chocolate lady: I was on a 4 hour train journey with no way to reach the buffet car as the corridors are too narrow for my wheels. A lady from my carriage was about to walk past me, then paused and casually asked 'can I get you anything from the buffet car while I'm there?' - No mention of disability, not patronising. Just a friendly offer that I was completely free to say yes or no to. Incidentally, I asked for a hot chocolate. and it was very delicious. 5/5 The breakfast lady: I was getting my breakfast from the hotel buffet. Something well within my capacity. But I always sit and survey the area before getting food - taking note of the locations of what I want, and best routes to them, etc. While paused, a lady asked me 'do you want any help with anything?' I replied "no thank you, I'm good". She said "Ok, let me know if you need anything" - and went back to her seat. Although in this one I turned down the help - it was also done well. She didn't get the 'was I struggling' quite right, but she listened to my answer and respected it. And because she listened, and just accepted my answer, I knew that if I did need help after all, I could ask her and she'd listen to what I needed. So the overall effect of her offer was very positive. (It's amazing how often people 'help' with what they've decided I need, and don't listen to what I say, and when it's not actually helpful at all, they genuinely can't believe it - and assume I'm lying/difficult/ungrateful!) 4/5 The toilet people: At a station, I needed the loo. The door to the accessible toilet was directly off the main concourse - so there were people nearby. I went up to the door - and realised I needed my RADAR key (key that unlocks many accessible toilets across the UK). So I sat by the door while I found my keys.) A woman sat near noticed me, and asked if I needed help (she didn't get up - just quietly asked from where she sat) - I said 'No, I'm just getting the key' she said 'OK' - and continued reading. 4/5 for the toilet lady. Again, a good experience. Once I found my key, I unlocked the door and started to open it. In leaps 'toilet man'. Taking the door from my hand so he could 'helpfully' hold it open. Wide open. Displaying my destination to the universe. And because he held the door - he aslo had complete control over when to close it. I had to sit in a toilet cubicle, visible to everyone in the station concourse, and just wait until this random bloke decided it was time to close the door. While he is watching my every move. I mean, seriously? DO NOT DO THIS. EVER. JUST NO. He didn't check if I was struggling. (If I wasn't capable of opening the door to an accessible toilet, I wouldn't be travelling on my own). He didn't check the context. He didn't pause to think "This is a woman I don't know, about to enter a toilet cubicle. Is it appropriate for me to take control of the door - and therefore her privacy?" And he didn't bother to ask. Let alone listen to any reply. I think common sense and basic decency all got melted by his need to feel helpful - and the result was.....not good. 0/5 stars for the toilet man. AVOID AT ALL COSTS. (And in case you are wondering, this is not a rare occurrence. It's happened to me several times. Rule of thumb involving bathrooms: unless I have approached you of my own choice and ASKED for help with the door, it is NEVER appropriate to touch the door to a toilet cubicle as I'm trying to enter. Regardless of gender.) So there you have it. When to help a disabled person: . Do they look like they are struggling/actual.ly need help? If YES: In this context, am I probably the right person to give help? If YES Ask if they want your help. If YES - go ahead and help. If the answer to any of the above is NO - stop. Your 'help' is not needed - and may in fact be utterly, deeply, embarrassingly inappropriate!

Human beings usually adapt pretty quickly to change. Absorbing it into a new normal - often without noticing it. I'm sure it's a useful survival skill, but when it comes to pacing to manage chronic illness or disability, this ability to normalise a new situation is a complicating factor, and can make managing a condition harder. It means that when something aggravates my symptoms for a few days, I adjust to the higher level of symptoms, making that my 'normal' - and as a result my pacing and self-management strategies automatically shift so that I'm maintaining the higher level of symptoms - not working to get back to the lower symptom level! Here's an example from my week: (Note: I have symptomatic hypermobility, PoTS, and some kind of neurodivergence): I recently had a prolonged busy patch - for just over a month my weekly rest days were all interrupted with little tasks that were suddenly needed and couldn't be delayed. Not enough to exhaust me in a single task, but steadily a bit more than usual. I kept soldiering on. Pacing to that higher level of symptoms. Then: On Saturday morning I had a physically challenging morning doing something I loved (Bonfire in the back garden of the new house, with my 7y/o niece) - which left me happy but exhausted. And I didn't seem to have recharged much through the afternoon and a quiet Sunday. On Monday I realised I needed some proper recharge time if I was going to recover from Saturday - and went to bed after lunch. Ensuring I spent a lot of time in genuine rest (e.g. long periods of no phone scrolling - mostly sky watching, and familiar audiobooks when I felt like it). By Monday evening, I felt worse. This is something that often happens when I've slipped into 'push through it' mode without realising it. I'm too busy pushing to notice the symptoms - and when I stop pushing, they make themselves known as I start to relax. So Tuesday I rested more. Only moving for bathroom and kitchen breaks. Dozing whenever I felt like it (a lot). By Tuesday evening, I could feel I was improving. My clarity of thought was returning, and my default position was no longer 'overwhelmed'. I actually felt better than I had for days - and the penny dropped: I had been long-term overdoing - and adjusting my normal to include the increased symptoms. Essentially meaning I was constantly aggravating my symptoms more than I was relieving them - creating a downward spiral. So even though I was working hard to pace, and thought I was pacing well, I hadn't registered the higher symptoms and responded to them. So I took Wednesday off too. More careful rest. And by evening I felt SO much better. Like I'd come back to life again. And now I've completely renewed my pacing/condition management strategies to ensure I don't get straight back into the long term overdoing it: 30 mins max at the laptop in one sitting. Physiotherapy must be done each day - preferably in multiple short sessions. Rest breaks whenever I feel I need to 'push through' or 'can't concentrate'. Rest breaks horizontal, with feet up wherever possible.

This next few months will probably be the hardest period of pacing I've ever had to do! I've just bought a house with my brother and his family (his wife is one of my best friends since I was a kid). Long term they will live in the main house, and I will have a custom built accessible annex. Short term....we have to rennovate the whole house - everything from floors to heating and electrics, bathroom and kitchen, etc. So to get through it without my health (PoTS and hypermobility) spiraling down, I've got to pace like never before! I guess the first thing is living in a rented room - so I'm not on site all the time - and can always get away from the chaos. My main role is admin/organising contractors - so I'm not expected to be doing manual labour or anything. Various contractors, my brother, and various other friends and family will be doing the manual stuff..... ....Only.... ...I LOVE doing fixing things, DIY and flat-pack furniture! And there's a lot I can do at the house - but only in small doses. If the doses are just right, it might even help me get stronger! So a blanket 'no manual work' isn't actually constructive. But if I overdo it, it will be crash and burn/injuries/months of recovery time. So looking after my health for the next few months is going to take a huge amount of self control and strategic planning. On Saturday I started as I meant to go on: I set myself a maximum time permitted on site. And when I arrived, I told everyone I had to leave at 12, as well as setting an alarm. (Everyone else telling you to go means 'ignoring the alarm' is not so easily done :D ) And it worked. I went home, achy and tired - but not utterly exhausted, and not injured. I also have a rule that 'No manual work until I feel in full control of my muscles again' (fatigue proper turns me into a rag doll). Yesterday I felt 'not properly recovered', so I popped in to agree some electrical spec with my brother - and went straight home again afterwards. And my plan for helping myself keep to this rule is: Wear office/nice clothes (especially skirts and stuff I don't want to get dirt and paint on) if I'm just dropping in, or if I've assessed myself as 'not ready for physical work'. That way I have a physical reminder/barrier to getting over enthusiastic and working when my body isn't ready/capable. It means making my decisions on how ready my body is in advance - and for me that is much more effective than 'in the moment' when I can get easily carried away. This morning I'm in smart office clothes. But this afternoon/evening I will reassess, and hopefully will be good to switch to overalls and do a bit of scraping wallpaper off the walls. For a set length of time. (My 'base layer' of clothes is suitable for either outfit, so the nice clothes to manual labour outfit change is minimal effort too). So on the face of it I'm well prepared....but I'm also still learning how to handle my massive fluctuations in capacity around B12 deficiency - 1 month high capacity (for me) - one month steadily declining, then a B12 injection, and back to high capacity. On repeat. So that's bound to catch me out a few times. I'm sure there will be plenty of ups and downs and lessons learned, but here's to an interesting few months!

I got a new wheelchair recently. I've been a wheelchair user for about 20 years now, and my main wheelchair was over 10 years old (very battered and starting to fall apart). So I got a new one - my first NHS chair: a Quickie Argon 2. I thought I'd just share some things about the experience. 1 You need the right wheelchair for the right activity - like shoes. Only MUCH more expensive. I have main wheels, back up wheels, and an offroad powerchair. Main wheels are used everyday. Back-up are for when Main wheels are broken, and also for if I want to leave main wheels in the car -walk a few steps to the house, then I can use back-up wheels in the house, reducing the lifting/twisting required. 2 Wheelchairs suitable for self propelling, long term use are expensive. Replacing my worn out one would be about £3k - money I don't have. 3 What the NHS can offer varies - and in my area is extremely limited: There is one active user chair available. Yep: 1 option that might possibly meet my needs. It's the same manufacturer as my previous one, but a cheaper model - that is slightly heavier. As I can't afford to buy one, it will have to do - and I will need to work out my capacity in the new chair - how far I can push, what type of surfaces am I ok on, and what will I need help on. And then adjust my life accordingly. 4 There are a huge range of colour options! It took me longer to chose than many of the other chair features - because it was about preference rather than need. I ended up choosing this midnight blue colour, and I absolutely love it. 5 Take into account how you will transport and store the chair - rigid frame chairs are more sturdy, usually lighter, and easier to self-propel. But also take up more space when not in use. My chair is a rigid framed one, but the back can fold forward, and the wheels are quick-release. It can't fit into a small car boot, but can fit in a standard one (sometimes needing to be dismantled) - and most importantly, I can put it on the back seat of my Caddy Life without any folding or dismantling. And I have places in my house that it can sit when not actively being used. However, for some people, a folding chair might be a better overall option if storage space or transporting options are limited - especially if they have someone who will be able to push them - making the easier self-propelling slightly less vital. 6 New wheelchairs need to be broken in slowly - even slight changes will change how you use your body in them, and can therefore worsen joint issues and pain if used too much before your body is used to it. Like an overtraining injury in an athlete. For me, as a hypermobile person, this affects me more than an average person. Seating position is REALLY important for managing my pelvis and spinal hypermobility. So the seat is slightly tilted to hold my pelvis in a position that doesn't annoy my SIJs or sciatic nerve. But it's slightly different to my previous chair's angles - and I forgot to take that into account. Just 2 days after getting it, I spent a looooong day sat in it...and really upset my pelvis! Now it's calmed down, I'll be doing a strict 20 minute limit between major fidgeting or standing moments as I build the muscle habits that the new chair needs. If it is still causing issues in a month or so I'll need to see if wheelchair services can help - perhaps adjusting the back, or possibly replacing the back with something more supportive. 7 Bearings matter! Over time the bearings in wheels get dirty, tangled in hair, and become less effective. While I've tried to look after mine and clean them periodically (although admittedly not as often as I probably should) the difference in the new chair is clear - although it's noticeably heavier, the better bearings mean once I'm moving, it's easier to push. 8 Which tyres? I ended up opting for solid tyres as I have a long track record of slow punctures in air-filled tyres (which make pushing SO much harder - and often wonky). The compromise is that it's more joggly on rough ground. I decided that since I use my powerchair if I'm outside for long or off the pavement, it was the best option for me. 9 Push handles? Although I do a lot of self-propelling in my chair, there are times (especially at slopes or rough ground) that I need someone to push me. My backrest is low because that suits my back best - but that means standard push handles are also low. So my 6ft brothers found my old chair a real pain to push. However, this chair has quick release, fold away, extendable push handles. So I can have them tucked away out of use, but when needed, can set them to a useful height - so they are a win all round! All in all, I'm loving my new chair. Even though I know I still have some adapting to do to make my life work well with it.

Moving house is exhausting and a major upheaval for everyone - but moving house while disabled comes with a whole new level of challenges! I recently moved house - stage one of a complex long term plan that will end with me living in a custom-built accessible annex. It's been exhausting but I got through it in better shape than I expected. I thought I'd share some of my top tips on moving house while disabled - things I've found helpful in managing my hypermobility, fatigue, and autonomic dysfunction during my move. I don't expect anyone else will find everything here useful, as everyone's situation is different, but hopefully some things will help someone! This list isn't exhaustive - and if I think of more things later, I'll add them. Get any symptoms that aren't your normal checked: Just in case they are something treatable rather than your usual 'stuff I have to live with' - I had a blood test that revealed B12 deficiency, and I started treatment just before my move started in earnest. While it didn't cure my other conditions it did lift a layer of fatigue and cognitive clouding which made everything that bit more manageable. (and yes, I know I was incredibly fortunate with this!) Start sorting as soon as you decide you want to move. I started in March - and moved in November. I went through one cupboard or shelf at a time, boxing up everything 'keep, but can do without for 6 months', leaving 'keep and use' stuff on the shelf, and getting rid of anything 'donate/discard'. This means when you get to the point of final packing most of the decisions have already been made, so it is relatively easy (and if you have help, you can just instruct them to 'pack everything from these shelves'). Label the boxes. I didn't always do this properly, especially on the stuff that has gone into storage. So I'll have to do a bit of extra sorting /deciding /communicating when unpacking when I do my final move into my annex. Allocate a 'tidy space' - a space where boxes and packing equipment must never be left. Looking at packing chaos is exhausting - I needed a space I could get away from it. Allocate a 'packing storage space' - where you can have a pile of boxes for keeping, and also temporary piles of 'donate/discard' stuff. Regular small charity shop or recycling centre/tip trips is better than fewer big trips. Initially I 'saved up' the stuff I needed to get rid of to make the trip 'more worthwhile'. But actually it worked better when I switched to regularly getting rid of smaller amounts of stuff (or even better, a friend popping round to collect the charity shop stuff - or the charity shop sending a collection van). Part of this is because the mental relief of a pile of stuff being gone is huge - and every time I got rid of that pile it was like a weight off my mind. And part because lifting a couple of boxes into the car every week or two is a lot more manageable than completely filling my car every few months! Note: I didn't do any selling online because it was too much brain power. However, using facebook marketplace, ebay or freecycle etc might work well for some people. I did send periodic telegram messages to friends asking if they wanted to take various items - meaning I got rid of some of the stuff I didn't need any longer but also felt I'd done a kindness at the same time. If purchasing a home, don't be afraid to ask for a gap between exchanging the contracts - and the actual move date. This gives time where you are committed to moving so can book help with confidence - but you can also spread things out a little more to help you pace. My gap was excessive - and due to one person on the chain being really fussy. It was about 5 weeks between exchanging and moving - and although it wasn't my decision, it was a HUGE help in pacing (and getting through it in the best shape possible) If your move involves renting: overlap! (By overlap I mean have a period where you own/rent both places - so I still owned my old house for one month after I'd physically moved into my rented accommodation). Because we exchanged early, I moved into rented about 4 weeks before selling. This meant I could take a few days to set up the rented place so it felt like home and was tidy - then move into to a low stress environment. Then do things in stages at the old place - 2-3 hours a day for a couple of days, then a day or two off - repeated for weeks. But always being able to go home - away from the chaos, where I could relax afterwards. In fact, I think if I had to move without an overlap, I'd see if I could budget for a weeks stay in a local hotel/Bed n breakfast/with a friend over the move date - so I could get away from the chaos and pace better. Use all the help you can get! Over the weeks, I had help from local friends, neighbours, and family, as well as paid help from my PA (making slow but steady packing progress every month for about 9 months), some teens from a local youth group wanting to earn some cash (kids of friends I know well) and a local '2 men with a van'. There are also professional moving companies - but they are more expensive, and because I was downsizing drastically, I needed to do a huge amount of sorting so I chose to pack the boxes while sorting, and use the man with a van option instead. If I wasn't downsizing I'd definitely have considered using a proper moving company. "Do really you want this in your new house?" is a very useful question when dithering about whether to keep something! As is having someone with you who can ask this and similar questions when you start to dither. Decision fatigue is real! Starting to make the decisions really early meant I was also able to take regular breaks. I'd take a week or so off with no packing work at all each time I started to feel totally overwhelmed by it all. Throughout the process, regularly check that your storage/packing area's aren't encroaching on your tidy space! this happened and without noticing why, my stress levels went up, and I couldn't face any packing at all. Then my PA cleared my tidy space of packing boxes - and instantly I could cope with more again! My overlap meant I could also spread out telling organisations that I'd moved - I did a few each week. Prioritising supermarket/food shops first, then health, then financial, then government (DVLA etc) - and finally other. When moving in, have a floor plan showing where you want each item of furniture to go  - and if possible - especially if the layout is tight - put masking tape on the floor to show exactly where everything goes. This massively reduces the spoken communication and brainpower required to manage your furniture movers! For the final few days, have things like meals planned in advance (easy food, comfort food, and no-prep food highly recommended). I did really well until the final 3-4 days - when it was 'these things HAVE  to be done by the move date' - so pacing options were far fewer - and stress levels higher. I had microwave meals ready for most of the final days - and a takeaway planned for the last evening - a relatively small thing, but it saved the 'I need food and I can't decide what, and it's all too much'. For days with lots of packing/unpacking - brace up! If you have joint supports, compression leggings or gloves, or support tape that you sometimes use - use them. Your body needs all the help it can get! Note: Use all aids/adaptations as prescribed. Be careful with splints that restrict movement of a joint (like rigid wrist braces) as I find they can sometimes aggravate adjacent joints more when used a lot. Just something to be aware of. I used my wristbraces for heavy lifting, but just tubigrip & compression gloves for packing boxes because the wrists being held straight put extra strain on my elbows for certain movements that cancelled out the benefit to the wrists - and those movements happened a lot when packing boxes! At the new place: have a 'tidy zone' (for me, the bedroom area) - priority 1 for unpacking, and once it is set up, no chaos allowed in. At the new place: have a 'not sorted yet' zone . And make sure it isn't visible from your tidy zone. This can be slowly worked through over time, but keeping it in one place means you can escape from it without leaving the house. (My pile is behind the sofa. Still got a couple of boxes there, but I can't see them from my recharging spaces, so I don't feel constantly overwhelmed/stressed by them.) It's ok to reduce standards for housework or personal care during the move if needed. With only so much energy, sometimes something has to give. For me, showers, cooked meals, and household tasks all reduced in frequency over the month of the move - even with all the help I had. By 'society's standards' this can feel like a failure - but actually it's an important pacing decision that will be better in the long run. Be prepared for the post-move crash. Plan ahead so you can have easy food (can be snacks rather than full meals, or takeaways, or microwave meals, or sandwiches, or anything easy for you), bed rest, cosy lighting, clean bedding and pjs, time off work etc. I tend to be ok-ish while I need to keep going - running off adrenaline. But when a thing is over and I relax: total splat. This used to make me panic - what if I've gotten loads worse? why am I like this? etc. But actively planning for the fact that I'm going to feel horrendous from the 'overdoing hang-over' and making practical preparations for it really helps - not least because when most in need of rest, I'm least capable of arranging it, and stressing about it will always slow recharging down! Wholeheartedly planning a couple of days of cosy is a much nicer experience than spending the same amount of time feeling awful and getting nothing done, while guilt-tripping myself for not doing what I can't!

Originally, all our keyring cards were laminated - and then over a year ago, our supplier stopped offering them. The new suppliers we found would have doubled the cost of the cards - which just didn't work. Then we discovered a new synthetic paper. It's like a paper/card made of plastic. So it can be wiped clean, doesn't tear, and is durable. Although the ink has a durable coating, it can be scratched if you treat it really harshly, or if you scratch it while damp, but they don't fray like laminate does, and are about half the thickness and half the weight - and for a similar price. And they are very tactile, with a slightly textured surface that feels almost soft. So now, all our keyring card reprints and new designs are in the new synthetic material. Some cards are still available in laminated, but as they run out they will be replaced with the synthetic cards. They are sized to match, so packs can have a mix of the two types. Note: Do not try to laminate the synthetic cards! It will probably melt them, and they don't need it. Here's a bit more information about the synthetic material: You can write on the card with ballpoint, fountain pen or pencil. But due to the coating, once written on, the writing cannot be erased. DO NOT use solvent based marker pens - these can dissolve the protective coating. They can be fully immersed in water, but when soaked the protective coating becomes easily damaged - so do not scratch them when wet. Once dry, their scratch-resistance will return. Cleaning: Use a common soft kitchen detergent or hand soap diluted with water. Products with low alcohol content (< 40%) can be used to disinfect the cards. Gently wipe the surface with a soft cloth immersed with the mixture of soft detergent and water. DO NOT use pure concentrated soap - always dilute! DO NOT use of microfiber cloths because these type of cloths might polish the surface and/or damage the printed image. DO NOT use all-purpose cleaning products that contain abrasive particles (like e.g. alum) as these products can damage the printed image. Do NOT use of disinfectant products with high alcohol content (e.g. 60% isopropanol or 60% ethanol or a mixture of both) as these products can damage the printed image.

I don't think this concept is understood - or talked about - nearly enough. In my experience disabled people spend very little time in our comfort zone, where things are easy. There are so many extra challenges to doing things, interacting, etc that if we are up and about, we are probably pushing ourselves. So when we reach the point of 'uh oh' we are looking at real life consequences if we push further. But for a non-disabled person, most of their life can be within their comfort zone - a zone where they can functioning easily and with little effort. And when they reach 'uh oh' it is often the point of moving into something that is difficult and might be actively draining - but not harmful. So please: before telling a disabled person to 'just push through' - please stop and think. They've probably already been pushing through for hours/days/years - we may even already be in the 'actual harm zone' so maybe it is wisdom to stop pushing now.

Today I experienced a perfect example of how attitude is one of the most important aspects of creating and shaping accessibility. It happened at work. The corridor doors between the lift and my office are too heavy for me to open from the inside. So usually they are held open by electronic door stops (they release to doors when the fire alarms go off) - with a nice big sign on them reminding people to leave them open. Today the door stops had run out of batteries - and so the doors that I needed to be open, were closed. What usually happens when access-kit fails (in my experience) is that people wait for you to arrive and experience the access fail - then say how sorry they are, and that they can't do anything about it - with an undertone of helplessness and no sense of responsibility to find a solution - or even to communicate effectively about the problem. But here's what happened with today's door issue: I arrived in the building. The receptionist had been keeping an eye out for me - the moment she saw me, she went up to one of the affected doors and held it open - and explained the issue to me, the workaround (opening the door for me was official reception duties til fixed), and the expected timeframe for proper fixing (within a couple of hours). I went through - and into my office, and started work. Within about half an hour they'd been fixed. They did all this off their own bat - without a single comment or request from me, and my ability to access my office was completely unaffected by the failure of the relevant kit. Key points: They recognised it would affect my access They came up with an effective temporary solution (extra door duty for receptionist) They ensured the underlying issue was sorted ASAP. This was exceptional to me. What is more usual, is that when something creating accessibility fails, nothing happens. We turn up to use it and are met with 'oh, I forgot about you!' and 'it's broken, there's nothing I can do'. This attitude means that access failure and exclusion is almost always the result - and there is rarely any opportunity to even consider workarounds. While it might be true that fixing it might depend on other people's / company's work schedules, coming up with a workaround in the meantime is vital . In this case they came up with one without needing my input. Sometimes it might mean calling the disabled person to say "Y has gone wrong. It's going to take X days to fix, we aren't sure how to make it work for you in the meantime - do you have an thoughts?" - This attitude is SO effective at creating access! True, sometimes the workaround might have to be 'not accessing the thing'. But trust me when I say that being on the recieving end of the following two different access fails are experiences worlds apart: a) knowing you can't access something in plenty of time to be able to change plans, after a discussion to consider alternatives. b) turning up and discovering with no warning that there's a major access fail, without the time or the support of key staff to create a workaround. In scenario a) you know your needs were considered, and your attendance considered important. That everyone did their best, and if you do think of a solution later they'll listen and act on it. So although it's frustrating, you also feel supported and heard. On the other hand b) is a slap in the face: Complete dismissal. Your needs are irrelevant and your presence is worth nothing. And even when you knew of a really good workaround, their attitude meant that you couldn't use it. So if you are ever responsible for a practical access fail - remember: come up with workarounds if you can, then communicate about both the problem and the workaround clearly. If you can't think of any workarounds: communicate - and listen to see if the disabled person/people can help you find a workaround.