Brexit and disability

Brexit terrifies me, as a disabled/chronically ill person. This is why.

  1. Rights. A lot of disability rights legislation comes from the EU. This could be incorporated into UK law after Brexit. Even if it is, there will be nothing stopping the government from rolling back those laws if they choose to in the future. But having a law, also means taking action when that law is broken. Brexit will mean that disabled people who have their rights contravened will not be able to go to the European court of law. There are courts in the UK that can handle these cases but there are many that end up in the European court of law and that will no longer be an option.
  2. Food regulations. Many UK food regulations come from the EU and it is unclear which of these regulations will be kept after Brexit. For me, the worst case scenario would be ending up with regulations like those of the US. I have a friend in the US who has been forced to go vegetarian because her body can’t handle the additives in supermarket meat and she can’t afford to buy from the butcher. My diet is already restricted because of my health problems. I already have to avoid a lot of food because of the additives in them. Less regulations mean less foods that are safe for me to eat.
  3. Benefits. I rely on disability benefits to live. The benefits system has already been cut back and cut back again since the financial crisis in 2008. Brexit is predicted to have a negative effect on the economy, and if that is the case, it may mean more cuts to benefits that I rely on.
  4. Grants and funding. There are a lot of programmes for disabled people, such as help getting disabled kids and teenagers through education, and help finding suitable work that are funded by the EU. It is unclear what is going to happen to these programmes and if they will continue to exist at all.
  5. Medications. There have been predictions of delays at the border. This could result in delays in getting medications into the country. My medications keep me alive. There are the obvious life-saving medications. There’s painkillers (last time I went without painkillers, I begged my sister to kill me to make the pain stop). And there’s medications that so drastically improve my ability to function that life is terrible without them. If Brexit delays my medications getting into the country, I am screwed.

Most of what scares me is that Brexit is happening very soon, but when I’ve tried to research these things, there seems to be no definite answers. At least not ones that are easy to find.


Chronic illness and diet/giving up sugar

One of my new year’s resolutions/goals for the year is to eat more healthily. I could do with losing a few pounds but I’m more interested in the health side of my diet than losing weight.

I know sugar is bad for me. Too much sugar is bad for anyone but I find that my digestive problems always flare up around christmas and easter. There’s also many other problems that sugar can cause or make worse that I have. My symptoms are all part of my chronic illnesses but I want to be sure nothing is being made worse by too much sugar.

So I’m cutting out added sugar completely. I will still eat naturally occuring sugar in things like fruit and dairy products. I will also be avoiding things with large amounts of natural sugar, like fruit juices.

I’m currently preparing for my new diet by doing lots of research. I’ve seen that sugar withdrawal can be pretty bad. I don’t know if I eat enough sugar to get withdrawal but I’ve made a plan to limit withdrawal in case I do.

My plan is to gradually introduce my new added-sugar free diet like this:

Week one- no added sugar in snacks

Week two- no added sugar in snacks or my main meals

Week three- no added sugar in my snacks, main meals, or drinks (so no added sugar in anything).

I’m going to then stick to the diet for at least two months before allowing myself small amounts of sugar. The rules for those two months will be:

1) No added sugar.

2) No fruit juices.

3) No sweeteners or sugar alternatives.

4) No honey.

There will be one exception to the rule- fresh orange juice helps a lot with constipation so if I have that problem I will allow myself fresh orange juice, but only if I am constipated and no other fruit juices.

I already foresee a few difficulties with this diet that I don’t yet have solutions for, but will hopefully find solutions for within the next week before I start.

1) Convenience foods. Cooking and eating is really difficult with my disabilities. Convenience food often makes it possible for me to eat when I otherwise wouldn’t be able to. So I need to find alternative foods that are easy. This isn’t just ease of cooking (which is usually done by someone else) but ease of eating. Sometimes I need finger foods.

2) Nausea. When I get nausea (which is most days), I need to eat something to feel better and it needs to be something that doesn’t make me feel even more sick. Usually, I have a plain rich tea biscuit or a small piece of ginger sponge but those are sugary. It also needs to be something I can easily get for myself since it often happens in the middle of the night when everyone else is asleep. I’m not cutting out bread so toast (or even just bread) with a bit of butter might work, but I don’t want to end up eating too much bread. A yoghurt might be okay but I would need to find one without added sugar, and sometimes I can’t handle the texture of yoghurt. The easiest snack would be fruit but that can end up making me feel more sick.

3) IBS. Any diet change usually causes an IBS flare up in me, even if it is a healthy change that long term makes my IBS better. There will be no solution to this. I just have to hope it either doesn’t happen or doesn’t last too long.

I know this is going to be difficult but I also know that it will be healthier for me. After a bad December, I am willing to do anything to feel even just a little bit better.

Christmas and chronic illness

Everyone’s christmas is a bit different. Everyone has their own traditions. Mine is heavily influenced by my chronic illnesses.

First is the preparation for christmas. I get most my christmas shopping done in November. It means it’s less stressful (and my body can’t cope with stress) and it means that everything has time to arrive in the post. Because all my christmas shopping is done online. Shops are difficult enough during the rest of the year, but the added lights and extra crowds near christmas means I can’t do christmas shopping at physical shops. It’s too exhausting.

One tradition I do have, that involves some christmas shopping, is going to a christmas market. We go at the end of November during the day and during the week. This means it’s not too busy and the lights don’t affect me too much when it is still daylight. However, some years I have had to skip this because I was just not up to going.

Then there’s decorating for christmas. My christmas tree does have lights, but they don’t flash and I’ve only turned them on once so far this year. Most of the time they just give me a headache so I don’t turn them on. I have a small tree because I don’t have the energy to decorate a big one. Most of my non-tree decorations are candle holders, because I used to love candles. I still put them out as decorations but I don’t light the candles anymore. I can’t cope with the smell. Even the unscented ones because of the smell when they are blown out.

There are no decorations on the outside of my house. As I said, lights are a problem for me. It’s also a problem for me when other people have lights on their houses. Being out after dark, even driving a short distance, often results in a migraine. My red glasses, that cut out all blue light, help a bit but there are still flashes. Since I am often worse in winter because of the cold weather, I don’t go out much after dark anyway. If the red glasses don’t do enough, I close my eyes (I’m never the one driving since I don’t habe a licence so it’s perfectly safe). Which ends up making me sick instead because of motion sickness.

And then there’s christmas day itself. My christmas is limited just to christmas day. I don’t have several days of seeing different family like some people do. I have enough family that I could do that but I just can’t do that much in a short period of time. Which means there are lots of family members who I don’t see at all near christmas.

On the day, I don’t have a christmas morning. Christmas day, like every other day, I sleep until lunchtime. I need about 14 hours sleep a night to function and christmas day is no exception.

Once I’m up, I eat lunch. It’s a normal lunch at a regular mealtime. Making big changes to my diet is very risky and having too many fatty foods is a no-go. So it’s a normal lunchtime.

After lunch, we open presents. I open mine very slowly. It’s overwhelming and I struggle to focus. It’s often too much for my brain to take in. Once the presents are open, my presents get put into a pile. The pile won’t get put away for several days. My memory is bad and I will forget what I have gotten so I will regularly look through the pile to remind myself. When it does eventually get put away, I will take photos first so I can use the photos as reminders of what I got. This makes it seem like I get a huge pile of gifts, but I don’t. It’s a fairly small pile. My memory is just really really bad.

After presents, we might play a few games. It depends how ‘with it’ my brain is that day. If I’m not up to games, I leave my family to watch tv or whatever they want to do while I read a book. I don’t watch tv with them, or at least not for long. Because christmas is like every other day to my body. And my body and brain cannot cope with the stimulation of tv for more than an hour-ish per day.

Then it’s time for dinner. It’s at the same time as it is on every other day. No 3pm meals. We eat at 6pm ish. Changing the routine of when I eat is too much for my digestive system so I can’t do mid-afternoon meals. We have a big roast dinner but it’s not that different from a Sunday roast for me. I might have a few sprouts, but all the extra things like pigs in blankets and different roast vegetables are not an option. Every new addition to my diet has to be slowly introduced to avoid my colon complaining about it. Having several foods that I only eat at christmas would mean introducing all those foods into my diet just for the one day. My meal will be mash potato, roast potato, carrot, broccoli, and meat. Those are all things I know I can safely eat. My family eats all the extra things so it is more for them.

The evening is either more games or more reading my book, depending on how my day is going. It is also a time to eat chocolate and biscuits and all that kind of stuff. Again, I have to be very careful not to go too far from my normal diet or my colon will get revenge.

And then it’s time for bed. My bedtime routine will be exactly the same as any other day to increase my chance of getting a good sleep, because after christmas day, I will really be in need of a good sleep.

Then my christmas is over. I get a week’s rest and then it is New Year’s Eve. New Year doesn’t really deserve it’s own post so I will add it here. I don’t go out or really celebrate New Year. It’s way too much stimulation and is too exhausting, especially since it’s late at night. I usually stay awake until just after midnight so it is a late night for me, mostly to keep my dog calm during the midnight fireworks. But I will spend the evening alone doing nothing of importance. At 11:50pm-ish I will turn on the tele to watch the countdown. But it is quickly turned off after midnight when they start showing fireworks. My dog hates the bangs but they give me a headache too and we are much better without them. And then it’s off to sleep as soon as the neighbours have finished their fireworks and my dog has calmed down again.

10 things not to say to a chronically ill person

I’m disabled with multiple chronic illnesses. This is a list of some of the most irritating things people say to me.

1) You’re so brave.

I’m not brave for living with chronic illnesses. The only alternative to living with it is suicide. Do you pity me so much that you think suicide should be an option?

There are a couple of exceptions to this- my mum and my sister. They have been there when I was begging someone to kill me to make the pain stop. They know how brave (or not) I really am, rather than just what I show to the outside world.

2) Can you have sex?

It’s none of your business.

3) You’re too young to be sick/disabled.

Some people are born with chronic illnesses. There is no such thing as too young!

4) At least you don’t have (insert illness that I don’t have).

Do we really need to compare illnesses? It’s also often an attempt to shut me up and stop me talking about my illnesses. Like I don’t deserve to talk about the bad things because it could be worse.

5) Have you tried…?

If there’s any chance of something working, I have probably tried it. Some of the suggestions I get could even be harmful. And I don’t need 20 people suggesting I try yoga.

6) What happened to you?

This is usually asked by strangers who want to know why I’m in a wheelchair. I don’t want to tell a stranger my whole medical history. There are plenty of wheelchair users that don’t want to talk about their medical histories. And it’s none of your business unless I choose to tell you.

7) It’s accessible. There’s only 2 steps.

2 steps is not accessible to a wheelchair. And places need more than flat ground to be accessible. Are there disabled toilets? Am I going to struggle with loud noises or bright lights? Can I access the whole place or just part of it? Is there food and drinks available if I feel sick and need to take medications or should I bring my own?

And that’s just things I need to consider. If you add in other disabilities, there are way more things needed to make somewhere accessible.

8) But you look fine!

I look fine but feel like shit. Do I need to look like shit for you to believe me?

9) Nothing.

I’m not saying go up to every visibly disabled person you see and talk to them, but don’t ignore me because I’m in a wheelchair. So many times, a shop assistant has asked my mum ‘would she like any help?’ or I’ve put items on the counter and got my purse out to pay, and then the shop assistant tells my mum the price. This only happens when I’m in my wheelchair, and I’m visibly disabled. My mum now walks off when we go to the tills to pay so they have no choice but to talk to me.

10) Are you sure it’s not just in your head?

Or in the words of one uninformed doctor speaking to my mother, ‘if you put her in a room and set it on fire, she will get up and walk’.

No. It’s not in my head. I have cut contact with multiple family members because they said or strongly implied this.

Activism and chronic illness

There are many causes I care about but I don’t do a lot to support those causes.

Donating money is difficult when you’re unable to work and on disability benefit. Money is tight enough without donating money to worthy causes, though I do make regular small donations.

Then there’s going out and doing something. Protesting and marching. These are mostly inaccessible to me. They take up way too much energy. But even if I had the energy, a lot of stuff isn’t accessible to disabled people at all because basic accomodations like ramps haven’t been put in place.

And then there’s online activism. With this one, I do as much as I can. But sometimes I just can’t. Sharing a post on facebook seems like it doesn’t take a lot of energy. But dealing with arguments that arise from it is exhausting. Sometimes, I just don’t have the spoons.

But there is a lot to fight for.

In many countries, someone that is disabled who either marries or moves in with a romantic partner, will lose some or all of their disability benefit and therefore cannot afford to further their romantic relationship.

In the UK, there is a 15% pay gap for disabled people. Disabled people are less likely to get promotions and other things that advance their career. Many disabled people who are able to work cannot find work because of discrimination.

In the US, it is legal to pay disabled people less than minimum wage. One company was actually found to pay their disabled staff in gift cards.

Disabled people are told they shouldn’t be having kids. Partners of disabled people are told they can do better and shouldn’t settle for a disabled person.

Every wheelchair user I’ve ever met has been ignored by someone who has chosen to speak to an able bodied person who is with them instead. My mum walks away when I pay in a shop now because shop assistants so often speak to her instead of me even though I’m the one with my purse out.

And many people who see themselves as allies to disabled people, treat us as inspirational porn.

There is a lot to fight for, and much of the time, I don’t have the spoons to fight for it for myself. But I will keep fighting whenever I have the spoons.

A flare up

I’ve been sick with a cold for over 2 weeks now. It’s starting to get better but my health is terrible.

The cold has triggered a flare up of fibromyalgia and ME. The painkillers have triggered IBS stuff (hopefully just IBS and not a colitis flare). The being too exhausted and in pain to do my coping methods like playing music, has caused an anxiety flare up. The anxiety is causing insomnia. The insomnia then makes my fibromyalgia and ME even worse. Something in all of that is making my migraines worse.

It’s going to take months to get over this.

Even scrolling through facebook is difficult right now because I get pain in my thumbs.

And this means that I’ve had to give up on a lot of my goals for the year. Previously I had half an hour to an hour a day (most days, I still had bad days where I did nothing) where I had the energy to do something I enjoyed or was productive. That’s the time I spent working on my goals for the year. Now I do not even have that. Many of them I can consider already achieved. For example, my piano playing has improved since the start of the year, even if it cannot improve any further from now on. The same can be said for my other ‘improve something’ goals.

I may also have to change my goals for next year and have them start from february or march. It is likely I will not have gotten over this cold by January.

A cold and chronic illness

I’ve had a cold for the last week. It’s actually been slightly over a week now.

Yesterday I was starting to feel slightly better and then today I’m back to feeling like death.

Having a cold on top of my chronic illness means life stops for me. Most people can push through a cold, can go to work still and be fairly normal, if a little less social.

When I have a cold, I spend all my time in bed or lying on the couch. I don’t shower. I eat things that are ‘easy’ like pizza (because they don’t require knives and forks). And I spend every possible moment asleep.

Also, I am unable to do my physiotherapy. After just one week of being too sick to do my physio, my pain is rapidly increasing. I tried to play a bit of piano last night when I was feeling a bit better and my wrists were killing me after just two songs.

It’s going to take a few months to build myself back up to where I was before I got this cold.

A few months just because I got sick with the common cold.

And that is part of the reason I have cut some people out of my life. If after multiple times of me explaining that I can’t be around sick people, you tell me you’re going to be late to see me because you’re going to the doctors with a chest infection, I can’t continue to have you in my life, because you are a risk to my progress.

Getting sick puts any progress I have made at risk. All my progress of the last year is gone because of this cold. If people fail to understand that they should stay away from me when they are sick, I am going to cut them out of my life.