9 things you can do to support a loved one with a chronic illness

I came across an article on BuzzFeed today. It’s called “18 things you can do when a person you love is facing a scary diagnosis.” It’s HERE if anyone would like to read it. I really loved it, because one of the big problems I’ve found since being ill is that people really don’t know what to say or how to treat you.

I thought I would combine that list with a few of my own to make it more relevant to people specifically with chronic illness’s.

So here are 9 things you can do to support a loved one with a chronic illness:

1. When I’m feeling scared, let me be scared. One thing that I find incredible frustrating is when I’m trying to tell someone that I’m feeling very depressed, or I need a shoulder to cry on, and they shrug it off by saying “you’ll be better in no time, don’t worry!”.

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We both know thats not true, stop saying it. Just hold my hand and listen, thats all I  need.

2. Sending little texts or messages really does make a huge difference. I may not be able to reply for a while, but don’t take that to mean I don’t appreciate it. I really do.

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Having a text from a friend can make my day.

3. A sense of normality is wonderful. When I am able to socialise I am not going to want to talk about my illness all the time, I have enough time alone thinking about it. It’s fine to ask me how I’m doing, but what I really want to talk about regular stuff like how you are doing at university, what you’ve been up to, or any gossip you have. I relish any news of the outside world! haha

4. I love it when people know and understand my illness properly, it makes me feel less alone. So do some research, it’ll probably take you less than 5 minutes to find out roughly whats wrong with me.

5. If I cancel plans it has nothing to do with you, absolutely zero. It is not because I don’t want to see you, it is not because I can’t be bothered, it is not because I’m annoyed at you. It’s simply because I am too ill that day. But please please please keep asking! One of these days I will be able to go!

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6. I spend a lot of my day reading books, watching TV shows and films, and listening to audiobooks, because thats all I have the energy to do. If you want to do something for me suggesting or lending me good ones is a great idea, it shows that you’re thinking of me in some small way, and that’s lovely.

7. If you want to help thats amazing, but offer specifics such as giving lifts to hospital or doctors appointments, as opposed to “if you ever need anything just ask.” That’s all very lovely, but asking for help can be difficult especially if the person is used to being independent. I know I always hate to feel like I’m a burden on people.

8. Many chronic illness’s come with stigma attached to them. Don’t give in to the stigma. Don’t believe everything you read in the mainstream media, because 99% of it is completely wrong. Don’t tell us to “try a bit harder”, don’t tell us to “snap out of it”. If you do you will swiftly be shown the door.

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9. You don’t have to be perfect, just be present. This is by far my favourite and most important one. Please don’t do a disappearing act. I am ill, and scared about what the future holds, I need my friends more than ever before. I know lots of people are worried about saying the wrong thing, so they don’t say anything at all, but thats worse! I say again, you don’t have to be perfect, just be present.

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If anyone has any other ideas, feel free to leave them in the comments.

Until next time. Rhosyn.

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Resurgent memories.

I’ve been continuing to sort out my room the past few days, just a few minutes at a time, a couple of times a day. It’s all I can manage but I still seem to be making decent progress.

I have been forced to confront some painful memories as a result of this. Sorting through old photos and university stuff reminds me what I’ve lost in harrowing clarity. My social life, my university studies, which were a huge part of who I was, were taken from me.  Although I’ve accepted thats the way things are at the moment and feel pretty okay about now, from time to time something reminds me of it, and it brings it all back up.  Having it shoved in my face the last few days has certainly done just that.

Nevertheless I’m glad that I’m doing it, because once it’s done, it’s done for good and I’ll never have to think about it again. I’m really looking forward to that.

I’m also much better at dealing with now, I did some yoga and that made me feel better. I also used this therapy technique where you have a conversation with a “kind and compassionate” version of yourself. It sort of helps you reason with yourself.

I think maybe I’ll take a break from sorting tomorrow. Need some time to clear my head before I start again.

Until next time.

Some things will help

I woke up this morning feeling pretty rubbish. I didn’t sleep well, and felt really on edge from the moment I woke up.

This annoyed me because I’d been really looking forward to going to yoga today (a miracle in itself because usually going anywhere fills me with anxiety) and was expecting not to enjoy it now. However when I got there and started, my anxiety levels went down and I actually felt a bit better.

I was totally amazed by this, because usually the only way I feel better if I feel really anxious is if I’m alone in my bedroom listening to Harry Potter audiobooks.

It made me think of an article written by someone who had recovered from ME, she said “some things will make you feel better, they will give you energy, you just have to find them.” Well I think maybe I’ve found something just like that. I’ve noticed that even just the last few weeks since I started yoga I feel calmer, slightly more energy, and less depressed.

It’s hard for me to even write this because I feel like doing so is to get my hopes up, and I try so hard not to let myself do that…but hey, I did it anyway! So if you who are reading this are in a difficult situation then please remember it’s not as hopeless as you think, there is something or someone out there who can help, you just have to find it.

Until next time.

Try, try, and try again.

Having a disease for which there is no cure is not an easy or pleasant experience. My illness is not a declining one, i.e. I will not keep getting worse until I eventually die. But there is no treatment available on the NHS, very little money researching any, and so very little support available to me. So I’m stuck in limbo.

I’ve tried a lot of “complimentary medicine” treatments, none of which have worked. Every time another one fails it takes me longer and longer to pick myself back up from the wave of depression that hits me after my hopes gets dashed yet again.

Last summer I’d decided I’d had enough, I just couldn’t take any more, I needed a break. So I took one, an eight month long one, and now I feel ready to try something else. My parents, unaffected by the crushing weight of false hope, have already got several possibilities lined up.

The first is a course of fatty acid supplements, this is championed by Professor Basant K. Puri. There’s an accompanying book, which I’m reading at the moment (see picture below) which explains the science behind it is great detail. This appeals to me because it’s backed up with actual science; double-blind clinical trials, case studies, and research. Plus all I have to do is take a few tablets, it’s not dramatically life limiting.

The second option currently being floated around is a strict regiment of supplements. This has been devised by an American called Dr. Jacob Teitelbaum (Dr. T for short – which immediately makes me think of Mr T. from The A-Team), who has had ME himself. Here is his website if anyone is interested: http://endfatigue.com.

This is also backed up with science, which I like and which makes sense to me. The down side is it would involve me taking 37 tablets a day to begin with! I’d be rattling! All those tablets don’t come cheap either so there’s that to consider.

I don’t know exactly what I’m going to do yet, but having options is a good thing. If anyone has any advice, I’d love to hear it.

Until next time. Rhosyn.

Childhood memories

Spent the last few days crossing a few things off the my list of worries that I wrote about last time.

Feeling a lot more clear headed, and surprisingly not feeling too bad physically. Although most of today has been a write off because of a terrible headache, for the rest of the time I’ve been feeling good-ish. I say ish because a good day for me does not mean I feel good, it means I don’t feel the need to spend the whole day curled up in a ball in bed.

I even managed to make a small step towards clearing out my room so it can be decorated. I filled a box full of books, and I did something everyone dreads. I sorted out my soft toys. I did do this several years ago, but I’m doing it again and being even more ruthless. I.e. only keeping the ones that have big sentimental value. Among the ones I’m keeping are a giant turtle given to me by my godmother, a big rabbit that my grandparents got me on the day I was born (not sure why everyone insisted on getting me huge soft toys, but there you are) and a giant fish beanie baby that is weirdly called Lips. All 90’s kids remember beanie babies right? I know me and my friends had hours and hours of fun with them when we were little.

So today has been one filled with childhood memories, so I’m feeling slightly, well not sad exactly, but a bit melancholic.

My headache has returned in full measure, so I’m going to go and take some more painkillers and try and finish my book. I’m debating signing up to the website “goodreads”, but not quite sure what exactly the point of it is, if anyone can enlighten me that’d be lovely.

Until next time. Rhosyn.

I have a full time job

Do you ever read something that perfectly describes how you feel at a particular moment?  It could be a book, an article, or in my case a blog post. It doesn’t happen very often, but when it does it can make you think about something in a completely different way.

I recently found a blog written by a 18 year old called Scarlett Curtis (she just so happens to Richard Curtis’s daughter – he’s the one that practically invented the Rom Com genre.)

She had chronic pain for 3 years after an operation on her spine went wrong when she was fourteen. Although the pain has been fixed she still suffers from depression, anxiety and anorexia unsurprising really when you think she was in pain constantly for 3 years!

She wrote a blog post just the other day called Depression is a Full Time Job, here is the link if anyone wants to read it.  http://scarlettcurtis.com/2015/03/16/depression-is-a-full-time-job/

She talks about how when you’re going through a bad patch with depression or anxiety, you don’t have time for anything other than being depressed. It takes up all your time, all your energy, so much so all you can do is lie in bed.

The bit that really struck a chord with me is when she talks about she felt busy but never actually ended up doing anything. That’s literally exactly how I feel. I feel as though I never have any free time, I very often feel overwhelmed with how busy I feel, even if the only thing I’m doing that whole week is having counselling for an hour. I always feel like I have so much to do, even though to any regular person all that stuff would take less than a day. I always feel like I have so much to think (and worry) about.

Right now for instance I’m worrying about the following:

  • I got my letter for my medical assessment today (for my benefits), so I’m worrying about that.
  • I’ve got to change my dentist appointment because it’s the same day as the medical assessment.
  • I’ve got to email the M.E. clinic to accept a place on the “Self Management” course they invited me on.
  • I really really don’t want to go on the course, last time it made me really depressed and was very unhelpful. I don’t even know if I’ve got the energy to go, but I’ve put them off twice now, I can’t really do it again.
  • How am I going to get to all of these appointments, I’m going to have to get taxis which are very expensive, and I can’t afford it.
  • I’ve still got to sort out my parents 25th wedding anniversary present.
  • I’ve got to try and sort my room out in preparation for decorating it in a few weeks.
  • I’ve got to rearrange a dieticians appointment, because it’s at 9:30am, and I can’t do that early in the morning.

A regular person would be able to get all this stuff done in a morning, but I can only cope with doing one thing a day, because the rest of the day is spent psyching myself up to do it, or doing necessary things like brushing my teeth, having a shower or eating lunch.

95% of my energy is spent on coping with day to day tasks. I have very little spare for anything else. I know I should practice more Mindfulness, try to just live in the moment and not worry, but sometimes the worries pile up so it makes it difficult.

All I can do it try to cross one off tomorrow, and ask for help where possible.

Until next time. Rhosyn.

About my mum

I’ve had a tiring few days. My grandma is visiting from the Lake District, it’s lovely having someone to talk to in the day other than inanimate objects. We haven’t exactly done anything, and yet I’m still more tired than usual.

My mum, dad and sister went to the Six Nations rugby match yesterday in Cardiff, Wales Vs. Ireland. Wales won, thank goodness! haha. I couldn’t go, obviously, so had to watch it on the TV, still very good but not quite the same.

It’s Mother’s Day today, so we had a roast and gave my mum flowers and Body Shop products, it’s a tradition for us to always give her the Strawberry Body Butter.  She says she associates with it being nearly spring when she gets it. I wasn’t able to actually help with the roast, but I certainly enjoyed eating it, although my version (being a vegetarian) is quite different.

I know everyone thinks they’re mum is the best, but mine really is! haha. If I become half as selfless, loving, patient, kind and hardworking and my mum, then I will a – be very surprised! and b – very happy. There is no way that I could survive being this ill for this long without her. She is a real life superwomen.

Her flowers.

Feeling quite bored now, but too ill to do anything, which is the worst combination. When this happens I just general end up watching about 10 episodes of a TV show in a row, so thats what I’m going to do now.

Until next time. Rhosyn.