Monday, 22 August 2016

Tiny Hannah sets off (and other things)

Hello again my lovely loves!

It feels a bit strange to be writing again so soon, but, as I had such a fantastic response to Tiny Hannah, I thought I'd let you know that she's off on her first adventure today.


She going to Edinburgh first, and then on to Derby, and, as you can tell from the photo below, I seem to be a bit nervous about her trip.


Fortunately, she has her Tiny iPhone with her if she gets in a jam.



As I said, the response to the doll, and the video Mum and I made, has been lovely, including a very nice mention from the Conscious Crafties, who wanted to know if I'd be interested in selling Tiny Humans through their website. (Although they, quite wisely, didn't use that slightly questionable wording.)
Unfortunately, due to the sheer amount of time and spoons it takes to create one of these dolls, it's unlikely that I'll creating a business out of it, but I'll show you how to make your own, bit by bit, on here. Perhaps in the future I'll do occasional commissions if someone really, really wants a doll made by me.
In the mean time, if you're keen to support Spoonies (and their carers) who are unable to work full time due to illness or disabilities, you can head on over to Conscious Crafties and check out their pretty impressive online shop. They're also on Facebook and Twitter.

*plans entire Christmas present list*

In other news I had one of my previous posts featured on The Mighty, which made me feel pretty bloody amazing. You can see it, in all it's glory, here.
ME-gids.net (the Dutch website that featured a translation of the same piece that the mighty chose to run), also just featured my "What not to say to Sick People" post, so that's available here.

You can keep up to date with Tiny Hannah's adventures on the blog, on my Facebook page, or on Twitter.


Saturday, 13 August 2016

Introducing NEW! Tiny Hannah Doll!


Hello my lovely loves!

I’ve been working on this top secret project for a while now as a way to let me be more involved with all my friends lives. 
It’s really difficult to see my friends having weddings and babies and birthdays and not being able to be there for them… so I created a tiny felt version of myself to go in my stead.
Check out the introductory "advert" above! (With an excellent performance from mum.)


Tiny Hannah has teddy bear joints in her arms, bendable wired limbs and magnets in her hands and temples so she can hold and wear magnetic accessories. Basically I got really, really into this project. It took about five lots of magnets to find the right ones, and so many parcels from the Postman to get this done, but I’m super chuffed with how she turned out.


She’ll be available to visit people so let me know if you want her to wing her way to you. She has two weddings booked already, one in a couple of weeks, and one in October, so she’ll need to be around for that, but otherwise she’s got her tiny suitcases packed and is ready roll.

I will ask that if she does visit you that you take care of her. She’s only made of felt, so please don’t pull her around too much, or give her to children or pets. It took an awful long time (and a lot of spoons) for me to make her, and I want to send her all over the place (and ideally do a photo journal of her travels), so please keep her safe.

I’ll keep everyone updated as to Tiny Hannah’s adventures, and do a series of posts explaining how I made her, so you can make your own Tiny Person.

Wednesday, 27 July 2016

A finished Birthday present (includes a GIF)

Hello my lovely loves!

Just a short one today, as I'm recovering from my latest friend visit. This time from my lovely, honorary sis, Catie.
You may remember that Catie is getting married this year, and I won her and her hubby, Ben, a trip to Venice for their honeymoon (hooray!).
Before I knew about that, however, I started making them a cross stitch to commemorate their wedding day, and potentially display on the day if they wished.
Since we can safely say that I now have their wedding present covered, this cross stitch became Catie's birthday present, and I gave it to her during her visit.
It took my just under a year, but I'm really pleased with how it came out (and the neatness of the back!!). If anyone's interested, the pattern was from an excellent etsy shop called Stitchrovia.

Enjoy.

H



Look at how neat this bad boy is!


Tuesday, 28 June 2016

It's not EU, it's me (us)

Hello my lovely loves,

I know that there has been a lot of talk about the EU and Brexit and you've probably heard enough about it last a lifetime, but this blog is partially to allow me to process and talk about my life, and I have been following the referendum with great interest and worry.
(And unfortunately, this is going to be something that effects us for a long time, so you might as well get used to the term Brexit because, as cringeworthy as it is, it’s not going anywhere.)

I'm pretty heartbroken about us leaving the EU. I've never enjoyed change, although I am pretty good at dealing with it regardless, but i think, for me, this type of change has been more difficult than it might otherwise have been. 
Had this referendum been about moving forward in unity and peace, of finding new ways to improve the world, then I might feel differently. But this doesn't feel like a step forwards, only a step back. 
We've chosen to close ourselves off from the world to try and protect ourselves from unifying changes, and choose a nostalgic world view over a wider picture.
Generally, I'm a big fan of nostalgia, I love 50s fashion and antique items of furniture, but I am careful to fully understand the political situations of those periods. I never say I was born in the wrong era, for example, because while I love dressing like I live in the 50s, I would never want to live a society where there was so much social inequality; for women, people of colour, LGBT people and immigrants.
Nostalgia is only good as long as you recognise a period's faults as well as its positives, otherwise it's just stagnation.

I am also very worried for all my friends who have joined us here in the UK, to live and work, and what this result might mean for them. I don't want them to leave, or feel that they're not wanted, not only because they are some of the most amazing people I know, and that they make this country better, but because no one deserves to be shunned for who they are or where they come from.
Although I believe most people who voted for Brexit are not racist or xenophobic, those that are have taken this collective decision as validation for their own foul beliefs, and there have been many reports of aggression and hatred, to and from people of all ages, to immigrants, and people of colour regardless of their nationality and that's horrifying.
This behaviour is completely unacceptable and it breaks my heart to see that a group of people are considering the UK's decision on Brexit as outright encouragement. They believe that 52% of the country agrees with them in every way, and that should anger the Leavers as much as the Remainers.
(I would briefly mention here that all such acts are classed as hate crimes and should be reported as such.)
Being half Bulgarian, and having a Bulgarian surname, doesn't help either. I might have been born here and lived here all my life, but I doubt that would matter too much to the people responsible for these attacks. Especially as I'm on benefits.

Another fairly large part of my worry (and my remain vote) was that I knew that a lot of the laws that protect disabled and sick people like me would be rewritten by the government. 
We currently have EU guidelines for conduct of disabled people, and our own laws have grown and changed alongside the EU's, as you might expect.
Even with these guidelines and protections in place, the UK government has not always abided by them as well as they should have, and has often left those in need to struggle.

Now we've come out of the EU, our entire legal system will be in upheaval as the government decides on huge swaths of laws, likely without going through parliament (there's just too many to do this).
I can't help but think that this is incredibly undemocratic and could lead to some difficult times for certain groups of people in the future, if they're not properly regulated and the changes aren't made transparent to the public.
If not, I will be completely unsurprised if it leaves the most vulnerable, more vulnerable than they already are.
We know now, of course, that any suggestions that were made as to sums of money that might be spent on the NHS, were just that; suggestions, and have now been debunked by both Farage and Iain Duncan-Smith. The other main draw of the Leave campaign was of course to cut down immigration, and that’s been debunked by Daniel Hannan.
Politicians are so very good at making it sound like somethings been promised when it's only been heavily implied (and unfortunately that makes all the difference when it comes to consequences for said politician).

(On a side note, I'm always surprised when anyone other than the rich vote for right wing governments, especially given the respect and dependence we have on the NHS in this country. Everyone always seems so surprised when history repeats itself and they give business and the rich an easy time and come down hard on the health service and the poor and vulnerable.
The whole ethos of the right wing is the priority of capitalism over socialist ideas, business over the welfare state (and, as an extension, the people reliant on it). As despicable as that might sound, that's what, at it's core, right wing politics is based on. That's why most conservatives MPs are from wealthy backgrounds, they've often never had to worry about what would happen if the NHS crumbled, because they can afford private healthcare. They know that the people most likely to do the biggest business and make the most money are those that are already wealthy, so they do everything they can to incentivise them.
Of course not all politicians, or all conservatives are bad, but... these are the facts. People may be in different places on the spectrum, but right wing politics put business first.
If you were wondering why I'm so sure that's what will happen in the event of further cuts and legislation, that's why; an extremely long list of examples through history. That and personal experience.)

There is of course, the domino effect of right wings groups around the world now calling for their own referendums. I've got mixed feelings about this one: I don't want our decision to shatter the EU (and potentially its continental peace) under any circumstances, but, as someone living in Britain, I also hope that we don't have to become too much of a cautionary tale in order to prevent that from happening.
I don't think the EU is perfect, by any means, but it sprung from a noble idea, to keep Europe from war, and I'm sad, embarrassed, and a little ashamed that we've elected to leave that behind.

Provided the EU is able to weather the storm, I actually think Brexit is a good thing for for the rest of the member states. Britain has always kept itself at arms length from the EU and that must be incredibly frustrating, especially when you're trying to get stuff done.
I just hope the decision to leave, and the continued general arseholery from Farage, doesn’t leave the EU with such a sour taste in it’s mouth that it refuses to work with us in the future. There are so many of us that don't want to leave, and I hope they'll remember us in their talks.

As much as I’d like a second referendum (one where people actually vote for what they want to happen rather than using their democratic power for “protest votes” and then being shocked when the thing they voted for happens), I do think it’s very unlikely.
Even if people regret their actions, everyone was given access to the same information, and the same opportunity to vote for their chosen decision, despite the lies that were peddled and the warnings that were given. 
Unless the petition for a second referendum gains more signatures than the 17 million people who voted to leave the EU, holding a second one would be changing the rules retroactively.
There is of course a possibility Brexit can be blocked by parliament; it is only advisory after all. I’m not sure whether it’ll happen, but we can only hope.
We know Nicola Sturgeon plans to fight tooth and nail against leaving the EU, and would rather break the union of the UK and go for Scottish Independence before Brexit happened, but we’ll just have to see what happens.
I wouldn’t blame Scotland, or Northern Ireland, for wanting out of the UK after the appalling display from the politicians in parliament following the referendum result. Maybe if I ask nicely they’ll take me with them.

If there's one thing this whole debacle has taught us, it's that a vote is not a toy or something to be taken lightly.
Whatever your situation, or your politics (and in light of the upcoming presidential election in the US, I'm particularly looking at you, Americans), you should never vote for an outcome (even in protest) that you would not be 100% happy to live with.
People have made that mistake here, assumed that their vote held no power, found that that wasn't true... and now we must all deal with those consequences. 
As I read online recently, votes do have power. That's why so many countries won't allow their people to have them.

H

p.s. here are a couple of pieces I created post-result, the first in anger, the second in appreciation. It gave me some nasty Payback, but I felt so emotional I just had to draw something. They’re also available as t-shirts, bags, mugs, and stickers on my redbubble page.



Monday, 13 June 2016

Gung Ho!

Hello again my lovely loves!

Here’s a few photos from Gung Ho! The fun 5k run (complete with inflatable obstacles) that my friends Catie and Ben did last month, to raise money for ME Research UK!
They raised a whopping £434.95!

Thanks guys, you’re amazing!

H


Ready to go!

Bouncy, bouncy!

 Slide time!

Victory!

Thursday, 26 May 2016

Coming soon on Super Pooped!

Hello my lovely loves,

Thank you so much for the positive response on my last post. So many people viewed and commented, and I can’t tell you how happy it made me when fellow sufferers said they found it helpful, and would pass it on to friends and family to make their own visits easier.
I’ve even received a request to have a couple of posts translated into Dutch for an online ME group, ME-Gids.net, in the Netherlands! So that’s a lovely feather in my cap.

I thought that it might be helpful if I gave you an idea of what to expect in the future on Super Pooped. Obviously I can never really tell exactly when I’m going to want to (or be able to) write about a specific subject, but I certainly have a list of topics I want to cover in the future.

Symptoms and Tips
Over time I really want to do a series of posts on different symptoms that ME patients suffer. Partly so people can recognise these symptoms in themselves, but also so non-sufferers can get a better insight into how these various things actually feel.
Depending on the length of the posts, I’ll then either continue on, or have a follow up post, talking about the best ways I’ve found to alleviate and deal with those symptoms.
I’ve tried a lot of things, and although my ways won’t work for everyone, it feels sensible to have an index of ways to deal with certain things. I’d also encourage people to share the ways they deal with these symptoms on those posts, to try and create a pool of knowledge for us all to draw on. 

These symptom-based posts will include:
Fatigue and Post-Exertional Malaise (Payback)
Pain, including headaches, muscle aches, joint pains, and muscle spasms
Periods and the difference ME makes
Stomach problems/IBS
Nausea
Low blood pressure
Blood sugar problems
Temperature difficulties
Cognitive problems, including Brain Fog, memory problems, difficulty finding words
Sensitivities: sound, light, smell
Tinnitus
Mood Swings
Anxiety and Depression
Insomnia
Breathlessness
Palpitations or arrhythmia 
Compromised immune system

(There are some symptoms I don’t suffer from, or only have mildly, so I’m always open to the idea of guest posts on those subjects, or getting information from fellow spoonies before I write them.)

Benefits
At some point soon I’d really like to do a post on things to bear in mind when sufferers are filling in PIP or ESA forms. It’s incredibly daunting and I think a lot of people panic because they’re aware of the troubles people have had with the DWP, and they’re frightened it’s going to happen to them.
If I can make that process a bit easier (and hopefully improve the chances of a good outcome), I’d like to.
I’m going to say right now that I won’t be filling out any forms for anyone, or even telling them exactly what to write, but my step-dad is a solicitor, and I think years of living with him has given me a good insight into the language these kind of documents use.

The year before I got sick
I’ve actually already started on this one, but it’s a very difficult topic for me so it’s going to take a while for me to finish it. 
I had a very difficult and stressful period before I got sick with ME (like a lot of sufferers), and I think it will be helpful for me to discuss it, and helpful for others to see that they’re not alone.

Life Hacks
Along with the tips for symptoms and benefit applications, I’d like to do a series of posts on ways I’ve adapted to achieve more every day things, like cutting or styling my hair, and finding non-chemical products that don’t make my ME sensitivities flare up.

The Cost of Being Sick
Although I often discuss the emotional and social costs of being sick, I've never actually looked at the monetary costs. I'd like to make a list of everything that I've bought as a direct consequence of my ME and work out exactly what's it's cost me and my parents.

That’s the vast majority of the things I’ve considered writing about so far. I imagine other things will crop up over time, and, as I said, there’s no set plan as to when these specific posts will happen (although if there’s one you’d like to see, feel free to let me know). ME-specific posts are bound to be interspersed with posts about things I’ve managed to achieve, things I’ve made, or just whatever is ambling through my mind.

I’m going to try and update once a month, even if it’s just a little hi from Standby Hedgehog. I don’t know about you, but I miss that sassy little mammal.


H

Monday, 2 May 2016

Visiting your sick person: A Rough Guide

Hello again lovely people!

After the feedback I got from mum’s post, (where she briefly mentioned changes we’ve had to make at home to not trigger my ME/CFS symptoms) I’ve decided to write a little guide to expand on that and help people spend time with their sickie, without wearing them out too much.

Dealing with Chronic Illness is confusing enough for the sufferer, and a constant learning curve, so if you didn’t know these things before, that’s okay. It’s taken us all a lot of time to learn these thing about ourselves anyway.
I know that friends and family worry about misstepping, so to make the situations we all face a lot easier for everyone involved, and to maximise your sickie/non-sickie bonding time, I’ve compiled some tips (with the help of some fellow spoonies) to make things go as smoothly as possible.
This is really a bit of a companion piece to What Not to say to Sick People: A Rough Guide, and, as with that post, it’s not designed to make anyone feel harried or guilty. After all, we want you to visit us, our illnesses make us lonely and we miss you, but... we also want to not feel rubbish afterwards. As always, Payback is going to happen, but here are some ways to minimise that as much as possible.

1. Surprises are not for Sick People
Don’t get me wrong, an unexpected email, a letter, even a care package through the post can lighten even the darkest of days, but when talking to my fellow spoonies, the thing that came up again and again was how difficult unannounced visits are. This is for two main reasons.

Firstly, living with a chronic illness takes a ridiculous amount of planning. Most people will see if they’re free for an event, add on travel time, and that’s pretty much it. 
For someone with a chronic illness, especially illnesses that specifically target energy reserves, there’s an awful lot more to it. 
It’ll take time to rest in order to build enough energy for the event itself, the planning of the event so everything that’s needed directly before, during and after is available, the time it’ll take to recover from that preparation, the travel time, the event itself (both of which will obviously be much more tiring than for a non-sufferer), and then finally the time it takes to rest after the travel and event in order to regain a normal (for us) amount of energy.
It doesn’t really change that much if the people are coming to you either. The steps are pretty much the same minus the travel time, but there might be other tasks that take it’s place,like making sure there’s food in, or clean glasses etc.
Any social activity takes an awful lot of energy and organisation to complete, if something unexpected happens on top of that, or we don’t have time to make these arrangements, it can completely wipe us out. 
If we haven’t had time to plan for a visit, then it could mean that some don’t have energy left to prepare food afterwards because we’re so busy trying to rest to catch up, or go to a much needed medical appointment. We either have to cancel our pre-made plans or risk pushing ourselves even further back in order to try and achieve them.
Each sickie will also have a time of day where they have the most energy, and unplanned visits often don’t get the chance to take advantage of that. 
In short, it’s a complete nightmare.

Secondly, adapting to unexpected changes is not a ME/CFS sufferer’s strong point, and I imagine it’s similar with a lot of illnesses where cognitive problems are an issue.
Think of it like this: most people minds are like travelling on buses; if there’s an unexpected obstacle in the road they’ll just drive round it, or take a different route. 
For sufferers like us, it’s more like being on a tram. We have pre-planned a route and laid a track to take us from point A to point B in order to pay the least amount of Payback possible. 
If something gets on the track, it’s a lot more difficult for a tram (and it’s traveller) to change routes. It’s technically possible but it takes time, a lot more effort, (a large winch), and there’s a fair chance you’ll end up paying more for the journey. There are no rail replacement bus services when you’re sick.

There’s also the chance that unannounced visits can lead to the sufferer having two visitors (or groups of visitors) at once. If one person visiting is tiring, two is infinitely more so, and that is why scheduling visits is very, very important.

Most sufferers won’t feel comfortable asking someone to come back another day if they’re not up to a visit (or have another visitor) if someone turns up in person unannounced, and doing so puts them in a very difficult position of choosing between risking offending a loved one, or taking an awful lot of punishment. 
It’s a deep seated fear for most sufferers of chronic illness that loved ones will decide that they don’t really want to hang around with a boring sick person any more and stop coming to see them. 
It sounds silly, but there are a truly astonishing amount of horror stories of sufferers dealing with exactly this. It makes the risk of offending people very frightening and it can make it extremely difficult to send people away even if that’s what would be best for the sufferer.

Not everyone requires a lot of time in advance to organise visits, so it doesn’t have to mean everything needs to be planned months in advance (although some sufferers will prefer that). Even if you have some spare time on a random day and want to see your sickie, then texting and asking them will give them the opportunity to say yes, or no, or suggest a time in the future that means they can make sure they don’t suffer unnecessary Payback.

2.Timing
Due to the aforementioned constant planning, it helps us to know   how long we can rest before you arrive.
If you're running late, just send us a quick text with your new ETA (as long as you can do this safely).
A lot of us have problems with anxiety, so a text will also stop us thinking you've been eaten by bears, swarmed by killer bees, or been hijacked by aforementioned bears and forced to pursue honey at the risk of death by angry killer bees.

3.Cancellations
There is always a chance that a sufferer may need to cancel a visit. As much as we want to see you (and we really, really do), our conditions are difficult to control effectively, and can change at any time, so all too often we may need to put you off until we feel more able.
Please never think that we don’t want to spend time with you. Every time I’ve had to cancel or postpone a visit it’s always broken my heart a little bit, and I know others will feel the same, so please trust that we will see you as soon as we feel able to.

4. Please don’t turn up ill
There's been debate for some time over whether ME/CFS should be classed as an auto immune disease; the vast majority of empirical proof of the existence of ME is based on proved changes in the immune systems of sufferers, though of course there are other theories that put more importance on gut health or stress responses (or a convoluted tangle of all of the above).
Either way, the general consensus is that our immune systems are in some way messed up, and the last thing you want to do to someone with a compromised immune system is bring them an extra illness for them to deal with.
What would take days or weeks for a fully fit person to deal with, could take weeks or months for a sufferer to fight off.
If you or someone close to you has an illness, even if it’s a cold, please let the sufferer know. They may want to postpone the visit until the sickness has passed, or just know in advance to get the anti-bacterial hand wipes and medical grade face masks out.

5.Know your sick person's sensitivities
The overwhelming majority of ME/CFS sufferers will have some kind of sensitivity that means one of their senses is heightened. This may sound like a superhero origin story, but it basically means that certain things are more likely to trigger brain fog, exhaustion and even Emergency Shutdowns.
Part of our cognitive problems mean that we struggle to filter information and it’s incredibly easy to get sensory overload, but there’s often one or two types of information that a sufferer will struggle with specifically.

Personally, my main issue is with noise. I use earplugs or industrial ear defenders every single day at one point or another, because my hearing is so acute now. After a certain point the information stops making sense and I feel a bit like I’m going to scream or faint. 
In terms of visits, things that help include speaking quietly and slowly, trying to have only one person speaking at a time (or understanding if I need to pause if there’s another conversation going on in the room), and not having other noises like the radio or TV on while I’m there.
I also try to avoid strong chemical smells like perfume, fabric conditioner and especially aerosols which makes me cough and often give me a headache, so avoiding those (or at least not using them directly before you come in the house) really helps.
Some people suffer more visually and have to wear sunglasses even inside, and prefer that people avoid stripes and patterns in bright colours to stop them feeling odd. 
(It’s fortunate that I don’t have a problem with this, because my wardrobe is primarily made of stripes and bright colours.)

Trying to keep the conversation relatively calm will also help prolong time with your sickie, because excitement is one of the most tiring emotions, and the most difficult to control. But I’ll be honest; it’s bound to happen sometimes, especially if your sickie is something of a Tigger like me, so don’t feel bad if it does. 
It’s important that sufferers have fun anyway, and it’s not going to harm them, it’s just going to tire them out a bit more quickly.

6.Time Limits 
As with cancellations, it’s likely a sufferer might need to set a time limit to your visit to make sure they don’t overdo it, or even cut it short if they reach their limit quicker than they were expecting.
It’s definitely not because they don’t want you to stay longer, or that they’ve suddenly got bored. It's more likely that they've become so excited about your visit they've worn themselves out before you've arrived in anticipation!
I absolutely hate setting time limits and saying goodbye to friends, because frankly I’d be happier if they never had to leave. But my condition doesn’t allow me that freedom so I try to work within those constraints because I know it’ll mean I’m more likely to see them again sooner if I take it slowly and calmly.
I find it’s actually harder not setting time limits because it means that I'm more likely to push myself because I don’t want my friends to leave. 
If I can say, " it’s a 20 minute day, today.” at the beginning of the visit then I'm more likely to stick to the limit I've set myself and not push it too far. 

Some sufferers will use visual cues to help with this; like a drawn ME-o-meter, or red, yellow or green bracelets to give an idea of the activity level the wearer is at. Some people  prefer to use egg timers or timers on their phones to make sure they stick to the limit they’ve set. 

Much like my resting ratio, it’s pretty torturous to stick to these timings, but as I’ve stuck to it I’ve noticed that the time I’m able to spend with my friends is (very slowly) getting longer, so it’s definitely worth it in the long run.

7. Know warning signals
Because it’s torturously difficult to stick to time limits when spending time with your friends, and it feels incredibly rude to suddenly ask people to leave because you’re tired, a lot of sufferers will push it too far rather than say anything.
It’s useful to keep an eye out for the warning signals of their illness so you can see when they’re tiring, and ask if they’ve had enough.
This will differ from person to person but there are some fairly good  indicators, namely:-

Blanking: if your sufferer starts to lose track of the conversation, to repeat themselves, to have trouble focussing or finding words, or just stops talking for a while, then it can be a sign that their brain is starting to find information harder to process and they’re starting to tire. This is the most likely and easiest to spot.

Avoiding eye contact: some people will also avoid eye contact or shut their eyes when they tire in an attempt to minimise the stimulus their brain is receiving.

Posture Changes: if your sickie starts to slump or wants to lie down it's a good indicator they're tiring.

Panda Eyes: I’m not sure if everyone with ME/CFS gets this, but as I tire my under eye circles (and discolouration between my eyes) getting noticeably larger and darker.

Yawning: it seems an obvious one, but it’s worth mentioning.

If you notice these symptoms, it probably best to check with them if they’ve had enough. They may say they’re alright and want to continue, and that’s fine, they know best, but it’s generally best to check.
Bear in mind that these signs can be very subtle; illnesses like this are caused "invisible illnesses" for a reason, and your sickie may look completely fine to you. (Unhelpful, I know, but unfortunately that's how these things go.)
In any case, try to remember that they are still sick, and if they indicate in any way that they're tiring, to take it seriously.

(A note to sufferers: if you feel awkward or embarrassed about asking people to leave then maybe try prearranging a codeword/phrase or hand signal to indicate you’re flagging. I know it's awkward, but you've got to put your health first. 
Plus if you've arranged a comedic signal you might feel better about it: no one's going to get mad at someone who suddenly starts doing jazz hands or humming the Lumberjack Song.)

8. Enough is enough
Once a sufferer starts to flag it's extremely unlikely they'll be up to more social contact that day. It can happen occasionally, but unless your sickie outright says, "I'll see you in x amount of time after a rest", it's best to assume they can't manage more.
Again, it's not that they don't want to spend the time with you, it's that they physically can't without causing themselves damage.

9. Standards may be different
Not everyone has access to the care they really need, or a family that’s able to look after them, so things like housework or getting food in for a visit may have to take a back seat. Sometimes it can literally be a case of choosing between tidying a room or having someone over for a visit.
It’s very likely the sufferer is aware of this, and is embarrassed about it, so it’s best not to bring it up.
If you’re worried that your sickie isn’t getting the help they need, or feel they could do with a hand cleaning, it’s perfectly okay to ask if there’s anything they need help with. They may not take you up on it right then and there (having people tidy around you is really tiring, so they might need to schedule another time), or at all, but they will appreciate the thought.
Similarly you could offer to make the drinks or food, bring food around with you, or check if there’s anything they need before leaving.

10. If in doubt, ask your sickie.
The person who knows most about your sickie’s condition, is your sickie. If you’re worried about misstepping or not sure what to do, then it’s perfectly fine to ask. 

11. It is absolutely fine if you’ve done these things.
Lastly, there’s every chance you may have done one or all of these things. That’s fine. Really. It’s not like you read up on what would be helpful and then did the exact opposite, just for kicks. Most of the time there is no guide for you to know what’s helpful and what isn’t; that’s why I felt the need to write one. So don’t worry, we still love you.


Now I’ve given you a few tips, I’ll finish up by giving you an idea of how my visits look.
I can currently manage one home visit of around 30-40 minutes, every month, less if I’m going through a bad spell.
I have an idea of who will be visiting in each month for most of the year now, mainly because I just left most months up for grabs and let people choose them, but the exact visit dates are prearranged a few weeks in advance, to allow me to plan medical appointments around them.
Most people come in the afternoon (that’s my best time), but I have done late morning visits if afternoons are tricky for them. Morning visits tend to be a little shorter as a result. 
Through trial and error we’ve found that I struggle having friends in the house after 6pm, even if they’re just with my parents while I’m resting upstairs. That’s when I start winding down for bed, and I need some time to process the day after someone’s visited, but now we know about that quirk we can adjust for it, and hopefully it’ll improve as I do.

I rest upstairs before visitors come. This is mainly so I don’t spend the time I’m meant to be resting watching the front door in excitement.
Mum or David greet my visitors and let them know what kind of day it is (20 minute, 30 minute, etc), and I come downstairs to spend time with them. Once I’ve had enough, I say goodbye and go back upstairs to rest.

I’ve found it’s a lot easier to go back upstairs if you start the visit resting upstairs; it kind of cements everyone minds (including your own) into knowing that upstairs is rest space and makes resting easier. 
Goodbyes are also very difficult and tiring, so going upstairs and allowing my parents to take over this part means I don’t have to cut into the talk time to allow for extra-tiring goodbye time.

If my friends have travelled a long way (which is common, as most of my friends are in London or littered around the UK/globe), then once I’ve gone upstairs my parents will spend some time with them before they go. Mum’s very into feeding people, so most get a slap up meal (and a variety of delicious cakes), and potentially a whistle stop guided tour around our local town. 
It took me a while to get used to this, because it feels like I should be the one getting to do those things and I hate that I can’t, but with time it’s getting easier.
Sometimes letting them have this time while I rest means I can split the time and see them for a little longer (even if it’s just an extra cuddle) before they go, so it’s definitely worth it.

I can't tell you how much it means to sufferers to be able to see their friends so I hope this guide makes it a little easier for everyone involved, whether you be travelling by bus or by tram (metaphorical or otherwise). 



Thank you to everyone who contributed their opinions and experiences to help me put this together. If you think of something else useful, feel free to add it in the comments or email me if you wish to remain anonymous and I’ll add it.