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!

‘The Doctor Who Gave Up Drugs’ – BBC Documentary Review

Ill-thought-out, dangerous and way too simplistic

I came across this programme because, as she very often does, my mother had ripped out an article from the Daily Mail for me to read that she thought I may find interesting and/or useful (they very often are neither of these things, but I gave this one a go).

Within the first couple of paragraphs I was infuriated by the fact that Dr Van Tulleken is grouping antidepressants (drugs I have been taking for three years now, give or take) with other medication that is used for an entirely different purpose:

“I’m talking about the drugs we take because the world we live in makes us unfit, unhappy and overweight – antidepressants, painkillers and drugs like statins.”

Oh so us depressed folk take antidepressants to make us feel better cause the world makes us feel sad; it just gets us down sometimes, y’know? It’s exactly the same as having high cholesterol due to a bad diet and lack of exercise.

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Dr Chris and his bowls and bowls of pills

As a doctor of medicine I would assume you know it is much more complicated than this, Dr Van Tulleken? Not everyone who has clinical depression/anxiety or any of the other numerous disorders people take these life-saving drugs for can be treated using “non-drug alternatives such as exercise”.

Also, why are we classing mentally-ill people as ‘healthy’? He didn’t make the definition of ‘an average healthy person’ clear in his experiment, where he poured lots of fake pills into bowls to demonstrate how many this ‘average person’ will take over a lifetime. Feels more like a visual aid more invested in the shock-factor than actual facts and research.

This theme of carelessness when it comes to language used when talking about these issues continued in the documentary. In the introduction a clip was shown where Chris stated he felt “intensely depressed” at the enormity of the challenge. My jaw literally hung open. I’m guilty of using phrases such as this in a light-hearted manner, even comics-shoeboxblog-depression-help-544297though I know I shouldn’t because it perpetuates misconceptions and therefore the stigma surrounding mental health, but to hear not only a doctor, but a doctor who is claiming we need to stop prescribing so many antidepressants because “their effect is feeble”compared to basically just exercising (I didn’t hear or read any other alternatives apart from swimming in some cold water)…

It just shows how naive and ignorant this man clearly is, despite his arrogance and smugness, and this disgusts me. He essentially said that one woman’s chronic pain wasn’t getting any better because she was too lazy to do her exercises. Nice, huh?

Of course I recognise the dangers in prescribing so many antibiotics because bacteria are becoming immune etc., and I definitely don’t agree with just throwing antidepressants at anyone who shows signs of depression; other options should be explored and discussed and a joint decision made with the GP/psychiatrist and the patient.

The tone and attitude of both the article and the documentary was patronising and derogatory towards a wide and diverse range of patients; from the depressed to the chronic pain sufferers to those withpmdd_2_53503329 infections.Which I would like to reiterate, shouldn’t be put into one big bundle and compared to one another.

Dr Chris Van Tulleken may have had the best intentions going in to this, but really, if you’re that clueless about the things you want to so drastically change, maybe do some research before spouting rubbish? People look to you for advice as a doctor, at least make it accurate.

At this point in my life, I need my antidepressants to keep going, get me through day to day and earn a living. Someday I really would love to come off them, but until then, I refuse to be made to feel belittled, weak and ignorant by anybody. And so should you. Whether you take antidepressants, painkillers, statins or any of the other drugs demonised by this programme.

Resources: http://www.dailymail.co.uk/health/article-3785796/How-swimming-cold-water-helped-depressed-woman-pills-TV-doctor-reveals-cases-drugs-don-t-work.html 

http://www.bbc.co.uk/iplayer/episode/b07w532p/the-doctor-who-gave-up-drugs-episode-1#group=p02q33dg 

http://miamant.blogg.se/category/personligt.html

http://funnyjunk.com/7+comics+on+depression/funny-pictures/5794158/

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 🙂

 

 

Vagina: A New Biography by Naomi Wolf

I have been keeping up with the reading for Banging Book Club (honest!), just not the blog posts. But I have so many feelings about this one, I really had no choice but to make time.

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Firstly, I believe this book, compared with March’s read Bonk by Mary Roach, was much easier to read for someone like me who struggles with the sciencey mumbo-jumbo. I much preferred Wolf’s writing style, which I knew before I began reading, but unfortunately this may also be the book’s biggest downfall. In making the narrative and the language more poetic than the likes of Roach’s, Wolf risks skewing the actual scientific facts in a way that sensationalises them and leads to sweeping conclusions that may not be entirely accurate.

Having said this, so many things in  Vagina rang true and seemed to join up some of the dots for me, that I can’t believe these things aren’t common knowledge or discussed by all members of society, in public and private and everywhere in between.

Within the first ten pages or so my jaw was practically on the floor. I had no idea, like most people, I can only assume, how closely the vulva/vagina was connected neurologically to the brain? Please excuse my lack of technical knowledge, you should read it yourself for what I actually mean, but my brain was just in a constant state of ?!?! for weeks afterwards.

The chapter on ‘The Traumatized Vagina’ was equally horrific and fascinating. Of course the main subject of this chapter was women who have suffered sexual abuse, and the link between the physical trauma, their mental well-being, and their general change in personality as a result of the violation.

On a personal level, it was the second section of this chapter ‘Vulvodynia and Existential Despair’, that gave me a lot of food for thought. I never suffered from vulvodynia, the condition that is primarily discussed in this section, but I have experienced pretty awful pain in that region on a fairly regular basis between the ages of 13 and 16. I would also pinpoint the start of my mental health problems being around the age of 15/16, so the following passage by Nancy Fish, ‘a patient and counselor to sufferers of vulvodynia’, struck a particularly powerful chord with me:

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This whole section of the book simultaneously blew my mind and made me nod so furiously my head nearly fell off my shoulders. I’ve never read anything like this before, and to think that I’m not the only one who’s ever felt this way was another ?!?! moment; whilst also feeling as if a weight has been lifted off my chest, and I can breathe a little easier.

I could go on and on about what I loved about this book (being a history nerd I thoroughly enjoyed the vagina through the ages section, for example), but all I really want to leave you with is a plea for you to read this book. If you have a vagina, or if you ever want to be close to a vagina, this should be compulsory reading. It should be on the national curriculum.

People will argue that because the science isn’t exactly spot on then we shouldn’t be promoting it this way, but it’s books like this that open up this kind of discussion. I, someone who is a participator in the Banging Book Club so clearly has an interest in this stuff, would have had no introduction to these topics had it not been for Vagina.

So, in a concluding nut shell… PLEASE READ VAGINA!

 

Mental Health Awareness Week

The thing with being totally open about the problems I have with my mental health, something I really do want to be, is that there is always that voice telling me I’m attention-seeking and selfish. It’s a vicious cycle. That’s the thing about stigma; it affects the way we think about things, and that is exactly what mental illness does to you.

My mum told me, the last time we were sat drinking cappuccinos in M&S cafe in Altrincham, that my dad really doesn’t like the fact that I’m on antidepressants. I told her that I think it’s because he doesn’t understand what they do, because he’s from a generation that was told taking such medication would mess with your head and leave you with no control over your mind, which was kind of right at the time, because they’ve come on along way since the early days of ‘happy pills’. My mum is rather in the belief that anything is better than what I was like 3 years ago, and I wholeheartedly agree.

I made the mistake of taking my mum to my first CBT appointment back then. I really should’ve thought that through, because I didn’t imagine it would mean her knowing that not only had I thought about suicide, I’d thought of how I would do it in a lot of detail; and lots of other details of how deep in I was that I had till then managed to keep from her. I didn’t want to upset her, it broke my heart to see her heart break, but it worked out for the best. She realised that she couldn’t and never would understand what was going through my mind, and whilst I know she spent some time blaming herself, she realised that it didn’t matter that she didn’t understand, only that I could talk about it.

If people don’t understand what it means to be depressed, the stereotype and ignorance will continue. The Katie Hopkins’ of this world will continue to spread poisonous messages about mental illness, and more people will die because they didn’t feel they could reach out and get help.

I also think I sought help after a relatively short amount of time (retrospectively, 18 months/2 years felt like a lifetime at the time) was because I knew what was happening. I might have been in denial for a while, but having been exposed to mental health problems previously, I relatively quickly recognised that I was depressed.

So we need to SPREAD THE WORD. Spread the word and SAVE MORE LIVES.

This is a brilliant time for this week to be happening, because mental health problems do not go well with exam season. I feel like it’s definitely something schools should address more, bearing in mind that I know the majority care a lot more than my school that was literally all about the results… kids’ health is more important than any exam result or any grade.

I wouldn’t wish what I went through on anyone. Not even Michael Gove or David Cameron (gasp). So minimising the misery caused if and when mental health issues strike is so so so important. And to do that we need to end the stigma, because it’s about bloody time.

I’ve got a sadness hangover.

Well, this got deep quickly, didn’t it?

On Saturday, I went to a Fem Soc social at a bar, and four cocktails happened before my anxiety rose to the point where I had to take myself off to the toilets and try and calm myself down whilst avoiding crying and ruining my face. I swiftly made my excuses and got out of there, and actually made it home before the tears arrived (and my housemate thought she had triggered me and felt really guilty, woops).

So I went to bed in a bit of a state, to say the least. And woke up the next morning with not a normal hangover, but what I have decided to name a ‘sadness hangover’, because it has happened enough times to warrant a name. I define a sadness hangover as the headache, aching bones and muscles, foggy brain, extreme tiredness, sluggishness, irritability, sickness and general zombie-like state of the next day after waking up the morning (or early afternoon) after a bad flare up of anxiety/depression. It sucks.

And it now being Monday evening, I am only just beginning to get over it. Hopefully if I get a good enough night’s sleep I will have a much better day tomorrow.  If I didn’t believe that, I don’t think I’d ever get out of the slump; it would mean going backwards, downwards into the pit of my own brain and giving into the voice in my head. And that belief what getting better is about.

I think a part of ‘recovery’, from depression particularly, is accepting that it’s a process. That sounds gross and therapist-y and bleugh, but true, at least for me. Sometimes I feel like shit, but I know that another time in the future I’m going to feel fucking awesome. When the shit times occur I like to remember that there is a massive difference between having this glimmer of hope, even if it is being quietened by the loud mouth bastard that says ‘EVERYTHING SUCKS, YOU SUCK, WHAT’S EVEN THE POINT? GO BACK TO BED AND MAYBE BASH YOUR HEAD AGAINST A WALL A FEW TIMES ON YOUR WAY’, and the complete, earnest, all-encompassing lack of hope, and defeat in the face of the voices, that I had in the past.

I had an anxiety attack on the bus this morning, but that’s okay because now I’m at home in my Winnie the Pooh onesie eating toast with honey on it, and everything is all right for now.