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)

Stickman Communications - creating tools that help communicate effectively about disability related symptoms, needs and issues, especially around hidden disabilities and neurodivergence Welcome! Welcome to Stickman Communications Ltd - creating tools to help you communicate about your disabilities, symptoms and needs, with a focus on hidden disabilities, invisible illnesses, and neurodivergence. About us Shop Blog

FAQ Frequently asked questions General Setting up FAQs What is an FAQ section? An FAQ section can be used to quickly answer common questions about your business like "Where do you ship to?", "What are your opening hours?", or "How can I book a service?". Why do FAQs matter? FAQs are a great way to help site visitors find quick answers to common questions about your business and create a better navigation experience. Where can I add my FAQs? FAQs can be added to any page on your site or to your Wix mobile app, giving access to members on the go.

We’ve partnered with Purpl Disabled Discounts Purpl is the UK's first disabled discount website founded by a disabled person who wants to help offset the extra costs that come when you live with a disability. Please register or login using the form below to obtain your Purpl disabled discount code. We have teamed up with Purpl, and their members can get a 10% off discount code to use on our website. Find out more on their website: https://www.purpldiscounts.com/