Chronic Fatigue Syndrome/ME

A year (and a bit) since diagnosis

And what a year it has been.

Since being diagnosed last July, I’ve left two jobs to start new ones, I’ve moved out of my parents’ house, been to a six week self-management course, become a vegan, and come off my antidepressants after over three years.

And yes, I’m still incredibly tired; despite making lots of positive changes that have helped in different ways.

Having a label isn’t always a good thing, but when you have so many different symptoms that don’t seem to add up to anything in particular, ME is a really useful label. I can use it to tell employers why I might need an extra break during the day, or can’t do a particular task one day that I was fine doing last week.

I still find it hard to tell people I have this condition, and I’m still working on exactly why that might be. There are many different reasons I can come up with; such as I don’t think they’ll believe me and they’ll just think I’m being lazy or attention-seeking, or I don’t want them to feel sorry for me or treat me any differently, or I just don’t really like talking about myself to people that aren’t my closest friends or family.

For all of those reasons I have only told a select few people, and even then it’s mostly been because I’ve felt like I’ve had to. And so far the reaction has been mostly positive, and the negative ones I think have been down to me not expressing myself clearly enough, which is something I have been working on. It’s important I make it known I’m being serious, which is difficult when I am almost always joking around or being sarcastic.

One way of describing the way ME makes me feel that I’ve used recently is that ‘it’s like being really hungover, but all the time’, which is something most people can relate to and immediately get it, if only the tip the iceberg. It also helps keep the conversation light-hearted, because I don’t want to go into all my symptoms (which is a bloody long list) when someone’s just asked what it’s like to have the condition, because they’ve never heard of it before.

I think what I’m trying to say is; nothing has changed, but everything has changed. I know what I’m dealing with, and I know (thanks to the self-management course and lots of internet research) what I can do to help myself and make my life easier. Going forward, I need to learn how to tell people when I don’t feel well and how to ask for help, and I need to commit to practicing mindfulness regularly to make sure I’m getting enough relaxation time.

This has been a post. Sort of.

 

 

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Coming Off My Meds – Part 2

It’s happened! I’m officially not on antidepressants anymore.

It feels like forever since I made part one of this “series” (over two months ago to be semi-exact), but I’ve finally reached the end of this long-ass journey. Well, this part of the journey anyway; I don’t think it’s ever really the end when it comes to depression and anxiety. For me anyway, just like my CFS/ME, it’s always something I’m going to have to work on to keep on top of.

Speaking of CFS, I’ve been going to a group for three out of the six week course now, and the management tips are definitely going to help me with my mood should it be affected. I think my mental health issues are what triggered my CFS in the first place, so depression and anxiety are some of my main symptoms that I need to manage.

So far, I haven’t seen a notable difference in my mood, but it is still early days. It makes me more confident knowing, after two courses of CBT over the years as well as the aspects of it in CFS management, that I can easily spot the warning signs and know what to do about it.

So despite being painstakingly long, coming off my meds has been relatively easy and simple. I’m relieved that it’s done, and I can start living my life anti-dep free; at least for now.

 

 

Coming Off My Meds – Part One?

I’m back!

Almost in time for Mental Health Awareness Week as well… not quite, but almost.

I believe May is Mental Health Month in the US though, so I’m still in time for that! Although, for me, as for many people, I am very aware of my mental health 365 days, 52 weeks and 12 months a year… so really, it’s always a relevant topic (that was awfully deep but I’m not sorry I’m proud of it).

ANYWAY get to the point, you idiot. I’m starting to come off my medication. I’ve been taking antidepressants for the past three years, and I think it’s time I experienced life without them.

That summary sounds like it was a really quick decision for me, but it was quite the opposite. It is too much of a scary concept for me to take lightly. So, in case anyone is interested, this is how I came to that decision.

When I first went to see my GP about my depression, I was just about to turn 18, and just beginning to come out of what was the darkest period of my life so far. A little switch had gone off in the back of my mind that said I needed to get help so I can get better and actually pass my A Levels, which were happening in a couple of months time. Medication actually wasn’t really discussed as a credible option for me, and I went along with the recommendation to try CBT.

I don’t remember having any particular feelings one way or the other about antidepressants, but I didn’t really have any particular feelings about anything at the time.

The CBT had some sort of positive effect, as I passed my A Levels and felt ready to go to University by that September. It wasn’t until midway through my second year that I decided if I was going to get the marks I knew I was capable of, I needed a bit of extra help. So, I went to my Nottingham GP, and he gave me some material to read about antidepressants to make a decision on whether or not I wanted to try them. I also chose to sign up for a course of over-the-phone CBT, which wasn’t useless but it wasn’t very useful either, but I don’t want to go off on that tangent now.

After lots of deliberation, discussions with good friends, and my mum, I decided to go for it. Like most people, I was first prescribed 50mg of Citalopram, which made me incredibly nauseous for the first few weeks, and then began to give me unbearable indigestion (seriously, it was like someone had put a hot poker all the way down my throat and into my stomach and was just twirling it around, constantly. I could barely eat).

So, I went back to my GP, and we gave Sertraline a try, and that is what I have been taking since. When I was struggling to get through the pressure of uni work, I doubled the dose to 100mg, and just a few months ago I went up to 150mg when I explained to my new/old GP back home that I was struggling more with the anxiety side.

I think, overall, the meds did their job. I made it through uni, and loved it, and I’ve managed to maintain a full time job since graduating; not loving it as much, but making the most of it and making £££. They’ve allowed me to live my life on my terms and not on my mental illness’.

However, I feel kind of flat. As much as I haven’t felt the devastating lows of my teenage years, during what should be highs, I often find myself thinking about how happy something makes me, rather than actually feeling it.

Basically, nothing is changing, for worse or for better, and I would rather be stable off the meds rather than on them; not knowing how they’re really affecting me, because I don’t remember what I was like before them; apart from being horrifically depressed, not wanting to leave my bed or do life whatsoever.

Who knows? I might be going back on them a few months or years down the line, but at least I’ll have some kind of measure of what effect they’re having on my mind and on my body.

Stay tuned to find out what happens on the next stage of my journey! Well done if you’ve lasted this long and got this far through my babble. I’m a fortnight into cutting my dose down by 50mg on alternate days for three weeks at a time (luckily I understand what I mean), so may be updating on my progress in a few weeks time.

Wish me luck!

Veganuary Week Three – Documentaries

Here it is, finally, my review of five vegan documentaries I’ve watched over the past couple of weeks. They’ve definitely kept me on track, if not frazzled my brain slightly with all of the mind-boggling facts in the process.

Cowspiracy

I had a lot of “WTF????” moments whilst watching this first film. I knew there was some environmental benefits of vegetarianism and veganism, but I had no idea to what extent. And that extent is extreme, and made my overall takeaway from this; why are we not doing anything about this??? Although, the documentary did sort of answer that by explaining just how much influence the meat and dairy industries have in US government. For me this wasn’t so surprising – we all know that money rules the world – but it’s still shocking.

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I recommend all of these films, but if you’re particularly interested in the environment and the causes of climate change, I highly recommend this one, because I haven’t seen the discussion of the impact of animal agriculture on the planet in any other film or article.

Forks Over Knives

This was another “OMG????” documentary, but this time to do with health. The film goes into great detail about studies done by two different men – one a doctor the other a scientist- who have basically proven that animal products cause cancer and heart disease and other big killers in the Western world. Animal products literally cause cancer. How are we not talking about this???

One fact that blew my mind was that erectile dysfunction is one of the first signs of coronary heart disease. I’ve never heard this before but it makes so much sense! If arteries are blocked, blood can’t flow around the body properly, so can’t get to the penis! And it’s animal products that cause the arteries to block (you’ll have to watch it for the proper science), so if you wanna still be able to get it up, you’d better go vegan!

Vegucated

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In this one we follow three meat-eaters as they embark on the vegan journey, and learn all aspects of veganism and the benefits of it. Therefore it was well-rounded and looked at all aspects-from the environment, to health, to animal welfare. Going on the journey along with these people was also very interesting, and made it seem like something much more achievable, as we could see real people and the struggles they went through and how they dealt with them.

Earthlings

Earthlings is always talked about as one of those films that turns people off meat due to it’s shocking nature. It makes me feel sick, want to cry and get angry all at once. It is really heavy, and very graphic, so if that’s something you don’t think you can watch, I wouldn’t recommend. However, the shock-tactic certainly works for me, and lots of other people, especially as the main reason for me embarking on vegetarianism was compassion for animals. I can never unsee those images of the cruelty inflicted on innocent creatures, and couldn’t live with myself if I went back to contributing to that in any way.

As well as the shocking images – including slaughterhouse workers stomping on chickens and throwing pigs around by the tail – there are some myths defunked in this film, including the ‘no part is wasted’ myth in regards to the leather industry. Many people believe leather comes from cattle also raised for meat, but the film shows cattle bought from poor, desperate families in India, put through a terrible and drawn-out ordeal before being slaughtered purely for their skin.

Meat the Truth

With this being the fifth documentary on this topic I’ve watched within a couple of weeks, it isn’t surprising that the majority of the facts and figures were the same as I had already learnt.

However, all of the previous films have been American, so to have a European (specifically Dutch) perspective was really interesting. Marianne Thieme is a great speaker; very likeable and able to keep you intrigued through all of the numbers and percentages.

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Overall, I highly recommend watching all of these documentaries if you’re at all interested in any of these topics. Ignorance is often bliss, but having our eyes wide open is the only way we’re going to make positive changes in our own lives, to the lives of others, animals and the planet.

284268_210517712331331_2327292_nP.S. I always think it’s good to read around the topic to get other opinions, don’t take everything at face value, and always with a pinch of salt. Do your own research as well as watching these informative films, folks!

P.P.S. All of these are on Netflix apart from Earthlings and Meat the Truth which are on Youtube 🙂

Chronic Fatigue Syndrome

Diagnosis and the aftermath

Since watching Emma Blackery’s video  over a year ago, I have been convinced that this was it; this is what has been wrong with me for the past five/six years.

I won’t bore you with all the details and long list of symptoms, but trust me when I say they all add up to CFS. I have had years and years of tests and examinations that have all come back negative, meaning I’ve hit wall after wall after wall. Which, as you can imagine, is very frustrating, stressful and incredibly upsetting; the latter particularly when you’re constantly being brushed off and told by ‘professionals’ that essentially there’s nothing wrong with you.

Finally, being convinced CFS was what I had, I forced my GP to listen, and she actually agreed, and referred me to a specialist. Various cancellations (by the hospital, obviously) later I attended my appointment in July, and after some final blood tests to rule out any other possibilities, I was diagnosed, and put on the waiting list for some treatment.

But now, I’m just confused.

There’s no cure, and treatment is mostly self-management and lifestyle-based, so I feel a little lost and alone. And my anxiety is through the roof, of course.

And the physio I saw recently for Graded Exercise Therapy confirmed what I already feared… I’m already doing all that I can. I go out to work and do everything I need to do, no matter how tired I feel, so in a sense I’m already in control of it. Which just makes me feel defeated, deflated and, to be honest, pretty devastated. I feel awful pretty much 24/7 and there’s nothing I can do about it.

So now what?

Well, I guess I’ve just got to keep on keeping on; and waiting for my CBT appointment, which will hopefully be more useful than the GET.

Don’t get me wrong, I know it could be a lot, lot worse. But if nothing changes, my mental health is going to suffer, I can already feel it, and I’ve already upped my dose to the maximum with my meds!

But for now, I’m going to relax, and enjoy the end of the new Great British Bake Off.

Thanks for reading 🙂