Ukulele bad days

Today is a very bad day. My back and legs are aching a lot and I can’t sit up for more than a few minutes without it getting worse.

Luckily my arms are fine. It’s very rare for me to get intense arm pain like I get in my back and legs.

And it can get very boring lying down. There’s not much you can do. But I’ve found its possible to play ukulele which I’ve just started learning.

So that’s how I’m spending my day 🙂


Sex and chronic illness

People with chronic illnesses and disabilities can still have sex. In fact there’s only one disabled person I’ve heard of that couldn’t have sex. He was an army veteran and had lost his penis along with his legs in a bomb blast.

So when you meet someone disabled or with a chronic illness, don’t ask them if they are still able to have sex. Just assume they can. They might not be able to do fancy positions that you read about in Cosmo and are pretty sure are only really done by gymnasts, but regular sex still happens.

I think it’s a topic that needs to be talked about more. But I think there’s a lot of people with chronic illness who don’t have sex as a big priority in their life. Maybe just because they have a lot going on, but also because there are a huge amount of medications that can reduce your sex drive.

In fact I’ve been on one of those medications for the last couple of years until a few weeks ago and it’s only now that I’m coming off it that I’ve realised how much my sex drive was affected.

So there’s plenty of reason it doesn’t get talked about, but please don’t ask the question ‘are you able to have sex?’

Even if they arent, it’s none of your business anyway.

Quitting smoking

For all the usual reasons I want to quit smoking. But on top of that I need to detox in order to follow Dr Myhill’s protocol for CFS/fibromyalgia treatment.

I’ve been smoking for 7 years since I was 15. And there has been many attempts to stop. The longest I’ve managed was a month and a bit.

But I’ve never prepared before.

This time I’ve prepared. I’ve cutdown my nicotine intake from 18mg a day to 2mg a day by continuously changing brands to ones with lower nicotine content. Each time I went down by 2mg a day and it didn’t bother me so the last 2mg shouldn’t bother me either.

And I’ve set a quit date- 3rd October. I’ve chosen that date because it will be the one year anniversary since I last drank alcohol.

I’ve given myself the best possible chances this time and I really want to stick to it. I have lots of motivation this time round.

Wish me luck!

Tomorrow’s attempt

Tomorrow I’m going to try something new. I’m going to try and do my own lunch.

Now I can’t cook. It’s too difficult with my health so I’m not even thinking about that. But my mum is covering for someone at work when she doesn’t normally work Mondays and she doesn’t have anyone to cover lunch time with me. Her plan was just to come home for lunch.

But I suggested that I try and do it myself.

So tomorrow for lunch I am eating cheese and crackers and fruit. The fruit is already cut up. The crackers are already out with my medicines and a drink in the kitchen. I just have to get the cheese (spreadable so I don’t have to cut it) and fruit out the fridge.

It seems doable if I’m on a good day but if I’m really struggling I can still call mum and she will come home from work (she works only 5 minutes drive away).

Wish me luck!

Writing a novel with chronic illness

I’m writing a novel. Well I’m actually writing two novels. One of them I’ve been working on for nearly a year and one is a new idea.

The first one is nothing to do with chronic illness and I’ve been writing it on my laptop. I got about half way through and realised it was a mess structurally so I’m going to restart that for NaNoWriMo (national novel writing month where you write 50,000 words in November). NaNoWriMo is difficult for me to complete. It’s a lot of words and to meet the target in a previous year I had to write for two hours a day- I did almost nothing else for the entire month, because for someone with a chronic illness two hours is a lot of time. I don’t usually do two hours of anything involving my brain in a day because it’s too much. I kept it up and stayed on target for a week and a half and then crashed and didn’t complete it. This year I’m making my own target of 20,000 words in a month so that I’ve done a good start on rewriting that book.

The second book I’m working on is a love story, where the main character happens to suffer from chronic fatigue syndrome. Whereas a lot of books where a character is sick seem to romanticise the illness, I don’t think that will happen because I have the illness myself. I’m showing the hard truth of it. And I’m also dealing with ableism, with the love interest being quite ableist, but the main character not quite realising it for a long time.

I’m writing this book in a different way. I’ve put Microsoft word on my phone and am writing it on my phone. Then I can write for just ten minutes at a time without having to turn on my laptop. It makes it bite size manageable chunks. And I don’t find it anymore difficult to type on my phone than on my laptop. It also gives me something to do when I have digestive problems and end up sat on the toilet for half an hour- I can take my phone to the bathroom but not my laptop. 

I think after being chronically ill for a while, you get quite inventive. I’ve found ways to achieve things that I can’t do in the “normal” way. I can’t sit at a laptop for hours writing- my arms get tired and my brain can’t focus for that long.

As well as getting more inventive, I’ve also come to believe that no matter your limitations, there is always a way to achieve what you want. You might do it differently than others, but there’s always a way.

The mess that is Carer’s benefit

Now that I’ve got my disability benefit sorted, I had a look at the other benefits available in the UK in case there is anything else that I am entitled to. I’m already on everything I can get, but I did have a long look at carer’s benefit and I came to the conclusion that carer’s benefit is a bit of a mess.

It is worth £62.10 a week. To get it you must care for someone (and that someone must be on the relevant benefits) for 35 hours or more a week.

If you do the minimum of 35 hours, you get £1.77 per hour. That’s slightly more than a quarter of the minimum wage (the minimum employers can pay) and less than a quarter of the living wage (the minimum needed for a good quality of life). If people didn’t become carer’s for their friends and relatives, the government would have to provide professional carer’s who would be paid more than the minimum wage usually (I’ve got this from my own research of looking for carer’s- they usually charge about £20 an hour and even if half went on expenses, it’s still above the minimum wage) so even paying the minimum wage for 35 hours would be cheaper for them.

So firstly carer’s are paid a pittance by the government for all the hours they put in.

Then I found that you can only claim carer’s benefit if you earn £110 a week or less (after tax and paying for care while you work- so £110 that you actually live on).

Imagine you are earning the maximum of £110 and claiming carer’s benefit. That means in total you have £172.10 a week to live on. Which is better than nothing but it’s not great especially when you factor in the additional costs many carer’s have. Let’s use my mum as an example. She pays for a cleaner because she doesn’t have the energy for cleaning after caring for me, plus she’s injured her back one of the many times she has had to lift me so physically can’t hover. We have a lot of hospital appointments with expensive parking. She doesn’t have time to shop around so often we can’t spend time looking for the cheapest option so our food bill is higher than it could be. We use a lot of petrol because I can’t travel any other way. There’s lots of little things that all add up. Being frugal takes time and energy, which most carer’s don’t have to spare. Carer’s need to be able to earn more money to cover those things.

I think carer’s should be paid the minimum wage for the hours they do- £234.50 a week for doing the required 35 hours. And carer’s should be allowed to earn more from normal work- say £300. Carer’s would than be living on a decent amount which they deserve. Because honestly it’s a hard job. My mum doesn’t sleep properly, doesn’t always have time to eat properly, can’t do things for herself without worrying about me, and is constantly stressed. If it was a regular job, the doctor would sign her off for stress, and suggest she get a different job.

Surely for such a difficult job, carer’s should be getting proper financial support.

PIP decision- disability benefits

The disability benefit here is called PIP (personal independence payment) and the last update on my claim I said that I was appealing the decision. The first stage of appeal is getting them to just do the regular decision making again. I had put together a letter for it and got a new letter off my GP for it.

I was expecting to come back from holiday to a decision. I was expecting the same decision again and that I would have to continue the appeal to court.

I came back to a letter saying they were still making a decision but today I received another letter- my decision letter.

The first decision was that I would receive lower rate care and no mobility (PIP has two components- care and mobility).

Today’s decision is different- I will get enhanced rate if care and enhanced rate of mobility- the top amounts available. And I couldn’t be happier. It will make the money situation easier and I’m so much more relaxed without the thought of appeal weighing on me.

I’m going to get an orchid for my GP for writing such a wonderful letter for me.

And my mum is going to write to my MP to explain everything that has happened and show him how the system just isn’t working.

I’m so relieved and I’m so glad I decided to fight the initial decision.