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 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 One

Finally, after over two years of being a vegetarian and banging on about how I want to eventually be vegan, I’ve gone and given it a go!

So far, it’s going really well, and I’m so pleased. I’ve had two tiny dairy slip-ups – one on New Year’s Day when extremely hungover and I was made a milky cup of tea, and the other stealing a small piece of bread with butter on it – but that’t it, and after a week I’m getting used to it and I don’t think it’ll happen again. After all, the first time I said I was going to do a veggie big shop, I came home with a ham and pineapple pizza, and I haven’t done that since!

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Linda McCartney sausages, mash, peas and onion gravy – vegan comfort food 

I definitely think it’s a good idea to go vegan gradually. I have a number of friends who have gone straight from being an omnivore to trying veganism and have failed within the first few weeks or months; many then giving up on the idea because they think it’s too hard.

Being veggie first means I’m used to cutting things out, finding alternatives and reading food labels. It also means I’m firm in my beliefs and my reasons behind giving up meat, and extending that to giving up eggs and dairy, so it’s less about willpower and more about remembering why I’m doing this, and that makes it much less difficult.

Here are some of my favourite vegan products that I’ve found so far:

 

First is obviously that vegan staple: tofu. These marinated tofu pieces are so easy to cook and so delicious I don’t know why I wasn’t using them before. The meal is a yummy stir fry – Sainsbury’s frozen stir fry veg, Cauldron tofu pieces, Yutaka wheat noodles and Sainsbury’s light soy sauce.

Next there’s my favourite, so far, plant-based milk: Oatly! oat milk. Perfect in porridge, my favourite breakfast (Quaker Oats Golden Syrup Flavour), and I’ve heard it’s great in tea so I’ll definitely be giving that a try.

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Hazelnut milk in coffee is pretty good, and rice milk is okay, but I’m hoping when I try more milk alternatives I’ll find one that I like more.

Next something that is very important to me: vegan cheese. I was so happy when Sainsbury’s brought out a range of free from cheese-style products, but very nervous to try them.

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Luckily, I like them! The cheddar-style is probably my least favourite, but on a sandwich with some salad it’s hard to tell the difference. The other two are perfect straight swaps for the dairy version, and I use them in the exact same way.

Finally some sweet things I found in the free from section where I work (Booths, northern Waitrose if you haven’t heard of it :)) Lazy Day Foods free from millionaire shortbread and Bell’s Gluten-free jam tarts – they’re delicious! Who needs dairy or eggs??wp-1483893785930.jpg

Next week I’ll make another update on how the month is going – possibly with some reviews of the documentaries I’m planning on watching this week, just to keep me motivated.

Thanks for reading!

 

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 🙂

 

 

Trip to Munich

I had a week booked off work, and a couple weeks beforehand my boyfriend broke up with me, so obviously I booked a flight to visit my friend in Munich. What better way to take your mind off your broken heart?

Well, the distraction part didn’t really work, but I am so glad I went. Travel is something I want to do way more of, and having a friend living abroad is too good an opportunity to miss!

Having only ever been abroad four times in my twenty-two years, catching a flight by myself was pretty scary. I smashed it, and I am so proud of myself. There’s nothing more satisfying than kicking anxiety’s butt.

My friend met me at the airport with a traditional Bavarian pretzel and I could not have been happier, cause I was starving. Then she led the way to her and her boyfriend’s flat, which is right in the centre of the city, and by the very beautiful river.IMG_20160517_155056

We had a really nice, chilled afternoon wandering around the city and the lovely English Garden:

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Certainly my favourite day spent in Munich was the second, as the weather was gorgeous and the Bavarian scenery even more beautiful. The plan was to get a cable car up to the top of a mountain my friends had previously hiked (my health would not allow that, unfortunately) but the cable car had stopped running… So we walked almost a quarter of the way up, which is still pretty high, it’s a big mountain, to the restaurant where we enjoyed a radler and some yummy German bread and dips; and, of course, the view.

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On our way back we hopped off the train at Schliersee for an hour to grab an ice cream in whilst the sun started to set over the mountains.

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Just so pretty!

On my final day, the weather was quite the opposite. Rain, rain and more rain.

The perfect day to go to a museum! Especially for my nerdy obsession with studying the Nazis, as the museum we visited was the ‘Munich Documentation Centre for the History of National Socialism’. Turns out being on my feet for so many hours a day in my job is an advantage when looking around museums, cause whilst the other two were slumped over having to rest on the stairs after an hour and a half, I was still standing after four hours of looking at all of the information that there was on offer, over four floors. And there was a lot! Even for someone like me who has done a hell of a lot of reading on the subject, there’s always something new to learn. Especially with this museum being specific to Munich and its personal relationship with National Socialism. I would highly recommend giving it a visit if you find yourself in the city.

I must go back to Munich if I ever get the chance, because there was so much to see, three days just wasn’t enough.

Thanks for reading!

 

On Heartbreak

So, my first boyfriend recently dumped me for someone he, presumably, believes is better than me. It felt like he’d drop kicked me in the stomach and I’d landed in a rubbish bin. Tossed out with the trash.

I’ve told myself it’s something that everyone has to go through; a rite of passage; experiencing the full spectrum of human emotions, and all that jazz. Even thinking of it in terms of understanding how characters in books could literally die from heartache! (I feel ya Cathy, I do).

The only pain I’ve ever felt that it comes close to is being depressed. That sounds kinda dramatic, but lots of aspects are the same; feeling worthless, feeling empty or like there’s something missing, not being able to eat or sleep, the feeling of loneliness even when there’s people around you (but especially when there’s not) etc. I got through being so incredibly low I wanted to die; I can get through this no bother.

I was single for 21 years before this guy came into my life and made me fall so ridiculously hard for him, and I enjoyed his company for like 7 months. It was a good 7 months, don’t get me wrong, but I did pretty alright for myself for those 21 years, and I will do again.

I am a rational human being that believes everything happens for a reason. Despite the soul-crushing anxiety I’m suffering from right now, which I hope will fade in time; stop fighting me, brain! If he can drop me so fast and move on so quickly he clearly wasn’t long-term boyfriend material in the first place. As one of my wise girl friends said, ‘If someone is better for him then you’re better off without him.’ Gotta love inspirational girl friends. The things that they come up with when someone has hurt you is priceless. I have some pretty special people in my life, that’s for sure.

Anywho, I think I’m done with this little bit of therapeutic blogging. Writing things out really helps me to get a better perspective on things. Also shopping, so expect some hauls coming up pretty soon, cause I have done a lot of retail therapy. 😉

Oh speaking of which, I’ve come across a new protip: been dumped? Go out and buy yourself some really nice underwear that he never has and never will have the privilege of seeing. That shit is empowering.

Gonna continue to dance like an idiot and sing my heart out to Hair by Little Mix now, ttfn.

(Images: https://www.pinterest.com/pin/512425263830481095/?from_navigate=true )

Things you should know when you go to a restaurant

So I’ve been working as a waitress for eight months now, and I have so much admiration for people who have worked in the business for any longer because it comes with so many little annoyances I feel ready to explode. This shall be my outlet.

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1) Your plate/table is not a rubbish bin

The amount of people that pile plates high with rubbish like wrapping paper, envelopes, sweet wrappers, bits of cardboard and/or plastic packaging, baby wipes, empty baby food packets/jars, scrap paper, broken toys… the list goes on. Someone has to clean that shit up, y’know! It doesn’t just disappear cause you’ve left, or because you can’t see it cause it’s gone under the table.

2) If it says ‘reserved’, yes, it really is reserved

The pub I work in is huge, so often we try and keep the raised area closed so it’s easier for the two or three waitresses to handle (it’s not a table-service pub, we just clear plates/glasses etc. and run starters/desserts). To do this we put reserved signs on all of the tables in that area, but at least 5 times a day, even when the pub is absolutely dead, I will hear ‘are these tables really reserved?’ And then when I say yes, ‘Why are they reserved?’ … Cause I say so, dumby!

And don’t get me started on people who sit on the only table that doesn’t have a reserved sign on it, like… come on. (One time there was actually a big party coming in and damn that man that rudely ignored me and sat there anyway looked like a fool).

3) I have two hands

We do curries at my place of work. They come on rather large, heavy plates. I can carry two at a time, with a portion of chips, on a good day. When I get  to the table and you say ‘um, we ordered three more curries, a garlic bread and some onion rings as well?’ I have to try reeeeeally hard not to pour your beef madras into your lap.

4) I’d rather you didn’t tip at all than you tip me with coppers

Seriously. I know you’ve only paid £3.99 for your carvery and £1.95 for your apple pie, but really, it’s insulting.

5) Your baby’s mess is not my responsibility

If you’re gonna bring your small child to a restaurant and let it throw more food on the floor and onto the high chair than it actually eats; clear that shit up. It’s disgusting. I want to come to your house and tread roast potatoes and peas and sweetcorn and yorkshire pudding into your carpet and see how you like crawling around on your hands and knees with a dustpan and brush cleaning it up.

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A meme too good to leave out!

6) I didn’t make your food

Being rude when you tell me your soup is cold isn’t going to make me want to help you. Don’t look at me like I kicked your dog, I just serve it!

I could go on and on but I think that’s enough moaning for now! Let me know in the comments if you’re a waiter/waitress and have anything to add to the list 🙂

(Images: https://www.pinterest.com/explore/restaurant-humor/

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The Vagina Monologues by Eve Ensler

 

It’s time for book no. 2 of the Banging Book Club! I, like a lot of people whose reviews I’ve read, read it in (almost) one sitting, because it reads like poetry.

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The majority of my reading was actually in public; on the tram and in a coffee shop, which was very interesting because of my immediate thoughts of what other people might think of me reading a book with ‘that word’ in such big letters on the front; because really that’s the whole point! It’s not gross or embarrassing, it’s a body part. It’s a very important body part, and reading so many women’s stories about their relationships with it was fascinating. I hope to see a production of this play because I imagine it would be a whole different experience to reading it.

The Vagina Monologues should be required reading for men and women alike.

My Vulva and Me

So of course reading this book got me thinking about my relationship with my ‘downstairs area’. This phrase  seemed like a medical term to me for many years, because when I started seeing doctors about pain down there when I was around twelve or thirteen, that’s how doctors would describe it.

Considering I’ve been looking at it since a relatively young age, I didn’t know what all the different parts were called and their functions up until the past few years when I’ve gotten more interested in things like the Banging Book Club. Thinking about it, that’s pretty shocking.

I was eventually referred to a fantastic dermatologist who really says it like it is; and this was the first time anyone referred to my condition as what it was: ulcers on my vulva. Finally! I could look at my vulva and understand what it all meant.

That was the beginning of my healthy relationship with that ‘downstairs area’. For years I didn’t want to look at it because it was the enemy. It caused me unthinkable amounts of pain, which made me strangely superstitious where I thought if I didn’t talk about it or look at it everything would be fine and the pain wouldn’t return. Thankfully, when I’d found my brilliant doctor I was put on medication that cleared up the issue (on the vulva, I still get horrible mouth ulcers but you can’t have everything), so now it’s all happy families with me and my vagina.

I never, ever told anyone about my condition. I told one close friend when I was sixteen but never went into very many details, only to get it off my chest when I was so upset about it one day at school. All of that is because I was embarrassed. Because the vulva and vagina is still a taboo subject. We just don’t talk about it openly enough, even amongst groups of friends who all have them.

TALK ABOUT YOUR VAGINA. TALK TO YOUR VAGINA! IT’S NATURAL AND BEAUTIFUL AND YOU DESERVE TO HAVE A HEALTHY RELATIONSHIP WITH IT.

 

 

 

On Being a Graduate

This post was originally going to be titled ‘On Disappointment’, so you can imagine the tone it was going to take… But I promise I’m going to try to make it a little more positive!

I’ve never been the type of person to have life goals. I’ve always just gone with the flow; never looking too far into the future. From the age of 15/16 it was more about just trying to get by; taking it day by day. Sometimes I didn’t even want to think about the future, because I didn’t want a future.

So, getting out of that dark place and rebuilding who I am and what I want from life is a process that I started after choosing my degree subject in that haze of being dragged through life during Sixth Form. And that’s still going on, now I’m an English and History graduate, and the only thing I know is that I’m done with education. Like a lot of people, seven months after graduating, I’m hoping my perfect job will appear in front of me… as if by magic… just land in my lap.

I thought that dream job had appeared like a mirage when it came up on one of my many, many jobs searches. Unfortunately, like a mirage, it disappeared before it was even close to being in my grasp when I was rejected without interview. This is why this post was going to be ‘On Disappointment’. It was crushing. And then it happened again, with another job I’d applied for, in a totally different sector, a few days later.

But, as my mum said, it mustn’t have been the perfect job after all, because as cliche as it is, everything happens for a reason. Another ‘dream job’ will come along. I just need to keep looking for it. I mean, preferably before my waitressing job destroys my soul, but I’m trying to be patient. Whether it’s in a museum, writing for a newspaper or something completely different, along as I’m passionate about it, I want to be paid for it.

I definitely don’t regret any of the applications I’ve filled out/interviews I’ve been to/jobs I’ve had since graduating. It’s just given me a lot more confidence in myself; particularly in my ability to talk to people, without anxiety or shyness getting in my way.

There’s that positive note I was after, and I think I’ll leave it on that, just in case.

Oh unless you’re hiring and want to give me a job…? Please?

 

 

Dear Autumn…

You always come and go too quickly for my liking. As much as I like the cosiness of winter and the brightness of summer, the transitional seasons are always my favourites.

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I think I like change; it makes me feel calm and like things are moving forward even though in my mind I often feel like I’m always standing still.

There’s really nothing like a walk through the trees, in the sunshine and through the last of the fallen leaves.

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Especially at a time when I need to get some perspective; to clear my head and allow myself some timeout to relax. Not a lot can do that quite like a quiet autumnal path surrounded by fields and the rustling and scurrying of squirrels and pigeons.

So thanks, Autumn, I’ll enjoy the last couple of weeks of your loveliness, and look forward to your return next year.