The Struggle

So I’m ill. Chronically ill. So I will always be ill. Sometimes I might feel worse or a bit better than others, but there is no cure for what I have. This is probably one of the hardest things I have ever had to get my head around, aside from depression. 

I wasn’t ever allowed time off from school as a child, unless my arm had fallen off or something and I carried that through with me to adult life. I feel guilty when I’m ill and need time off. I feel bad that I need to lay there and do nothing quite a lot of the time.

Since my diagnosis, I’ve been learning a lot more about my two conditions and things make a lot more sense now. I always wondered why when I felt at my worst, the thought of anything but the saltiest food imaginable made me feel sick. Well, it turns out that salt makes me feel better and I’m encouraged to eat more of it (I also take Kelp tablets and magnesium supplements so that I don’t have to eat so much of it).

Anyhow.

I’ve not made that many drastic changes to my daily life. I drink a lot more water, I eat a lot better and more selectively, I work a day from home to try and limit my travel time, I try and walk more for some steady exercise….but that’s about it. I still work a 9-5.30, busy job and commute to London. I still do the cooking, cleaning etc. I still do my best to go out and about and live a life….. but GOD, sometimes this is hard.

I forget you see. I forget that I’m ill. Not just a common cold ill but really, I have quite big, potentially serious things wrong with me. I read about people with my condition who are wheelchair bound, who can’t support their own heads or eat solid food or manage to leave the house. I am forever grateful that I don’t have the symptoms that severly but this is a condition that changes, there’s no saying it couldn’t get worse.

Sometimes I am almost normal….sometimes I am so exhausted, that I can barely stand up. Not just tired. When I say to someone ‘I’m really tired’ and they say ‘oh me too’, I don’t bother to laugh or say they have no idea, but they probably don’t. It’s not tired like you need an extra hour, it’s tired like you’ve not slept at all for a week and then flown a few long haul flights. My legs don’t work and I misjudge spaces and walk into things, my hands cramp and ache, my body is lead and jelly at the same time. I mix words up and can’t hold a thought. My stomach stops working and won’t digest anything. I can’t breathe properly. I’ll get a migraine so bad that I think I’m going to vomit, stop breathing and maybe black out.

But I forget all this and get cross at myself for not being able to do everything. For wishing I could have a few days a week off. For not being able to go to everything or stay to the end on nights out. For me, it’s just normal but sometimes I really do have to force myself to remember that it’s not normal at all and to cut myself a little slack.

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The onward rush of time

It happens, one minute you’re bemoaning the fact that you can’t meet someone decent, that men are the devil and that you have no hope of ever meeting someone, someone ‘for life’. The next, there’s five months and 20 days until your wedding. That’s how life happens. That’s how quick it goes, in the blink of an eye. Which is pretty terrifying really.

Last year, I was terrified about turning 30. Not just because I was getting older and quite frankly, none the wiser, but mostly because I felt that I hadn’t really achieved much up until then. Thirty years spent on this planet and what did I have to show for it?

A tweet today from Becky over at Spirited Puddle Jumper made me think about how I’ve actually found it.

Everyone on Twitter at the time told me how they were actually, despite their own panicks, loving their 30s. Mostly because they felt that they were finally ‘settling in’ to themselves, finding they were more comfortable in their own skin and where their place was in the world. I scoffed. I was so far from this point that the notion that I would soon reach some form of my own personal ‘zen’ was inconceivable.

But….while I might not be quite there, while I often have the most epic of hissy fits because ‘everything looks disgusting on me’ (really), or feel like there are many things I could have/should have done before now, I find myself more ok with this.

  • Every day I learn more about the limitations and strange goings on of my muddled little body, things make much more sense now. Before, I thought I was quite possibly being a bit insane with how unwell I felt. Now I know there is a reason. I still have a lot to learn and a long way to go in managing it witout drugs but at least I have a diagnosis.
  • I don’t have time for people who don’t have time for me and have made my peace with that instead of feeling guilty about it. I have people who love me and support me and are positive influences in my life and that is what is important. I don’t think I would have had the peace within myself to accept that sometimes, these things just aren’t going to happen and to move on a year or so ago.
  • I might not have changed worlds or cured a disease (I always wanted to ‘make a difference’) but I do volunteer work and I raise money for charities that mean a lot to me. I try to be there for the people I care about, and as much as I can be, be giving and selfless. I hope that by doing these things, I might have made a difference to someone, somehow.
  • I am about to (crazily soon) become a wife, and I really cannot wait. We have our church, venue, photographer, cars, and band all sorted. The hymns are picked, the honeymoon is booked and my dress (which I am totally in love with after a few very stressful and confusing weeks) is ordered.

So – 30. I might not be where I thought I would be when I imagined being this age. I am not a high-flying career woman or an aid worker in Africa but when I was about 12, I wanted to be a jockey and I’m not one of those either. I am a firm believer that things happen for a reason and exactly how they are supposed to. I have wonderful friends, healthy family and I will soon be a happily married woman….and that’s pretty good if you ask me.

Depression: a little understanding

I’m aware that a lot of people are unsure how to deal with it when I have a ‘turn’ or let’s be honest, when I get depressed, again.

Although it will never be as bad as it was that first time – once you actually KNOW that you’re depressed, the signs, what to look out for and how to cope with it a little better, I think falling quite so deep into that spiral happens less often – it does happen, and it doesn’t take someone dying, or having a fatal disease, or being penniless. That’s what I always thought. I can’t be depressed, can I? I have no reason to be. Well, brains and brain chemistry, genetics, thought and behavioural patterns don’t work like that. Most of the time it just sneaks up on me, often when I have a lot going on in my life at the same time. It all adds up.

Imagine if you will, one of those joke tins where you open the lid and the fake springy snake pops out? It’s like that….. all the thoughts and stresses and worries of life are being stuffed into the tin and at some point or another, one of them is just too many and the lid just pops right off and that’s me done, I can’t manage to stuff it all back in, I have to sit and deal with it all.

It’s not all about being sad and crying and moping around (although I do tend to cry an awful lot, at the drop of a hat at these times, mostly through the pure frustration and helplessness that I feel in that situation) and it most certainly isn’t about ‘cheering up’, ‘thinking positive’ or ‘pulling myself together’ or any other of the nonsense that someone who has never experienced depression will no doubt say.

It’s about nothing. You feel empty right where there should be joy or rage or in fact any emotion. You feel bereft of anything, rather pointless really. You’re not all that sure why you are put on God’s green Earth because you’re not worth the shit on someone’s shoe.

Getting up is a struggle, being awake seems like the most difficult thing in the world. Being around other people is exhausting because it’s taking everything you have to pretend that you’re there, to nod and smile and make the right noises in the places where you think you should. It’s pretty much taking all that you have not to get up and walk away as quick as you can, back home to where it’s just you, where you feel safe.

The most I will feel during this time is a knot, right at the centre of my chest, a physical sensation that everything is completely tangled up and I have no idea where the start or the end is.

So I back off from everything and everyone for a while. I go to work because I have to but apart from that, I do little else. I say no when I’m invited out, I stay home and mostly in bed. I don’t even go to the shops because I can’t stand people looking at me. Sometimes, I’ll get ready to go out just to get a little way down the road and not want to do it any more. I will get so upset that I will turn around and go home. At my worst, I would force myself out, only to get there, think that everyone was looking at me and thinking how absolutely disgusting I was, have a panic attack and have to leave and go home, feeling even worse about myself. Thankfully, after medication, a fair bit of therapy and successful hypnosis for some awful confidence issues, it’s not this bad.

But this is where the problems lie with relationships, you have to work at them. When I’m having a bad time, I back off, and go quiet and non communicative. People then quite rightly back off in return, they don’t hear from me, or I always say no to invitations, so there’s no contact…and the less contact there is, the less I want and the harder I find it to make contact again.

I know that when you haven’t had any experience of something, it’s very hard to understand. When you’re a positive, outgoing, confident, optimistic person, you don’t see how the smallest thing (a bus driver shouting at you that no, he doesn’t go to Goodge Street) can play on your mind and send you spiraling into an internal monologue of self-doubt but please, try to be emphatic. Try and see. Because honestly, the very worst thing that you can do is turn the other way and ignore it. To tell someone that nothing is wrong, that they shouldn’t feel the way they do. Believe me, they wish with everything that they didn’t feel like this, that they could stop the whirling negativity that constantly spins around their head telling them that they aren’t good enough or how stupid they were to just say that or do whatever it is they just did.

If you really can’t get your head around it, just have a little compassion, drop them a text, tell them you’re there and be there for them when they occasionally pop out of the black cloud. Depression can be terrifying, don’t let someone be terrified and alone.

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Small but mighty

When we decided one Saturday night that we absolutely HAD to make caipirinhas, our Kenwood smoothie maker wasn’t best impressed at the bag of ice that we chucked at it. So much so that after that, it couldn’t even manage a frozen strawberry or two.

Of we popped to Lakeland, my Aladdin’s cave, to find a replacement. At first, our eye was caught by the bigger, meaty looking machines but nestled in the corner was the little Tefal ‘Fruit Sensation’. Being someone who is magnetically drawn to anything in miniature (tiny toiletries are just so much more fun, aren’t they?!), I wanted it straight away.
17867_1We stood and um-d and ah-d about it for about twenty minutes, unsure that it’s small stature would mean that it couldn’t cope with our frozen fruit and ice but as we don’t have a lot of counter space in our kitchen, we loved that it didn’t take up a whole lot of space.

A very helpful chap sold it for us, and here’s a great tip for  you –  in Lakeland, if you change your mind about something that you have bought even if it’s just because you have decided that it doesn’t go with your kitchen any more, you can take it back and change it for something else. Just keep the box, all the bits and pieces and your receipt and you can go back and say ‘this didn’t like when we put ice in it’ and get one that does!

As it turns out, this little machine is amazing. Stick frozen strawberries, blueberries, raspberries in it – no problem. Chuck in a whole frozen banana – no problem either. It all clips apart and washes easily. Makes two small glasses or one big glass, so you’re not forever making too much. Also comes with smaller choppers for nuts, herbs, fresh fruit….it’s a wonder. I’m looking forward to making a few little batches of soup in it come the winter.

Tefal Fruit Sensation, £39.99

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Budget Beauty

For a girl who will happily spend £200 plus on a haircut and has five or six £30-40 foundations sitting in a makeup drawer, I’m oddly stingy when it comes to skincare.

Don’t get me wrong, looking after my skin is important, but I think you can get great products at a fraction of the price if you get some great recommendations or you’re willing to give things a try.

I’ve also found out the hard way, that sometimes with make up, expensive doesn’t always equal better. So, I’ve done a quick round-up of my favourites for you. (I’ve not been paid, asked, or given free gifts for this post.)

Skincare

  1. Boots No.7 hot cloth cleanser. I was recommended this by Mizz Ban and have since told everyone I know about it. Feels indulgent, leaves skin soft and clean and helps with breakouts. A steal at £9.95 but even cheaper when they have their No.7 voucher deals.
  2. Yes To….. I read about this in a magazine and swiped the Yes To Tomatoes moisturiser and cleanser when I was suffering oil slicks and break outs. The moisturiser is sufficient that I don’t get dry spots, but neither do I get oily throughout the day. Lovely and light and apparently, good for my skin! They have other products for different skin types too. Ranges from £5-£15.
  3. Body Shop seaweed day cream. Another one to control the oil but great for combination skin. Light, quickly absorbed, no shine all day. Recommended to Soupy who also loves it. Nice size tub for £4.
  4. Superdrug Vitamin E skin oil. Don’t let the fact that this is an oil put you off, it won’t make you feel oily or greasy. This little tiny bottle is a lovely treat for your face. I keep mine in my wash bag for post swim when my skin is so tight I feel like Joan Rivers. At £2.99 what’s not to like?!
  5. Boots Botanics eye makeup remover. Gets off even waterproof mascara and liquid eyeliner without rubbing. I think that’s all I need to say. £3.99 but often in their deals.

Makeup

  1. Revlon Just Bitten (BIG crayon things). I tried these, £7.99. I tried the Clinique Chubby Stick, £17. Guess which is better by a country mile? Soft lips, wash of colour. Bingo.
  2. 17 tattoo me liquid eyeliner. If you can get your hands on this (it’s sold out in most places), then do. Helen told me about it after we’ve been hunting for eyeliner that stays put all day. I can’t use the wibbly little brush that comes with it, so I use my own eyeliner brush. £4.99 bargain.
  3. Max Factor mascara. I’d recommend any of them but I usually go for 2000 calories (a classic) and more recently, I did a review of the eye brightening one – I don’t see a difference in the brightness of my eyes but my lashes look great! Depending on where you get it £8-£12 ish but considering I’ve spend a lot on big brand mascaras and always been let down, it’s worth trying a few out!

There we have it, my picks…and just for an out of left field idea… This week, I found myself with a horrible, very red and sore crater on my forehead from where I had squeezed and squeezed a spot. A hole, really and honestly where the spot had been. So before I went to bed, I chucked some Manuka honey on it (only the 6+ cheapest one) and the next morning…. GONE. No red, no spot, no hole, no sign of it at all.

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Watch what you say…

Did you know that going through a bit of a health ‘crisis’ can make you a bitch?

I use the word crisis loosely here because, let’s face it, I’m not dying of anything but it is enough to make life more than a little miserable for the majority of the time. For a swift summary, over a year on and still no diagnosis, hopefully one in the pipeline but that’s just the start. There’s some hefty medication going on for the migraines as they were getting fairly serious but that’s not something that can carry on long term so I’m hoping that by some miracle they just buggar off in all honesty.

Did you know that stopping popping a pill full of hormones can make you an irritable bitch?

After 15 years on the pill, on the advice of one of the consultants, I stopped. And GOD, I wish I could go back on it. I’m moody, mean, aggressive, spotty, my hair is different, I don’t know when I’m due on, my periods HURT. It’s hell basically.

Did you also know that going through redundancy, having a month (over Christmas) to find a job and starting said new job while being ill can make you a bitch?

Stress levels with me are always on a high if we’re honest, I’m not one of these mellow people and since being ill, things have been a bit harder to manage. Towards the end of last year, I was signed off work for over a month as things got too much for me and I had what we shall call an ‘episode’ at work.

To say being made redundant was the best thing that could have happened is an understatement, I love my new job but BOY is it different. It’s in London, it’s commuting, it’s busy and I have to use (what little there is left of) my brain.

Did you know that ill (which mimics chronic fatigue) + new job stress + very little free time = bitch

I now get home at just gone 7pm. For some people, this is nothing. For me, it is tough. Along with the illness is a rather horrible symptom of absolute fatigue. Not just being tired but bone achingly worn out a lot of the time. So I get home, eat, bath and I am in bed by 9.30. That’s just 2.5hrs to myself of an evening and really, they’re not to myself because cooking dinner, eating, trying to fit in a bit of exercise and washing and drying my sodding hair do not count and relaxing time. I feel like I have no time just to sit. Sit and read, sit and think, sit and do nothing but relax. I relax at about 2pm on a Sunday afternoon, just in time to start thinking about work again.

Once I have a diagnosis, I then have to make sure I am fitting in there; at least 8hrs sleep, meditation, yoga, 30 mins moderate cardio per day, resistance training per day and making sure I am ‘relaxed’.

Did you know that being ill and tired and stressed makes you a bitch?

I’m always stressed. Always, without fail, every day. You know when you break your cheap, crappy work pen and there’s that little spring indside, (that incidentally, you lose and so can’t make the damn thing work again because now it won’t click) I feel like one of those. Always so tightly wound that it really doesn’t take much for me to snap, and snap I do. Oh yes. I don’t have the time or the patience for people or situations any more. The neighbours drive me mad, the cats drive me mad, commuters drive me made, everyone drives me mad. It’s really not healthy.

And finally. Did you know what all of the above, while trying to save for and plan a wedding, well that makes you the bridezilla bitch from hell?

In one breath, I say to the Fella, “I can’t do it all by myself, I don’t know about these things either, you NEED TO HELP ME.” (while crying) and in the other, as he excitedly shows me a mock up of an invitation and before I’ve really even looked at it, “No, that’s horrible, I can do a hundred times better than that.”

So, there we have it. Bitchy. Bitchy but hopefully getting there.

An almost diagnosis

I’ve been trying to find another website that quickly and easily explains what the doctors (finally) think is up…but I can’t. So I will try and explain how I see it – which might include medical inaccuracies but I’m doing the best with what I’ve been told and what I have read.
This is how my brain has interpreted it.

The underlying condition behind my possible condition is hypermobility. Put simply, due to a problem with the collagen in my body, everything is just way too bendy and stretchy. This means my blood vessels and all sorts of other things are too elastic.

So take some of my symptoms for example:

  • My stomach doesn’t have the ping in it to really get my food moving so it sits about making me bloated and sicky and uncomfortable. This means smaller, easier to digest foods and not too many icky carbs which my stretchy stomach can’t handle.
  • It can cause migraines. I can’t find an explanation of why anywhere but I assume it’s something to do with my blood vessels not contracting properly and the blood all wooshing around too freely. This can mean it sometimes ends up all down in my legs with not a lot left for the rest of me – a bit like a man’s brain and his penis trying to think at the same time.
  • Somehow or another, this can also lead to Restless Leg Syndrome which is the probable cause of me feeling like I never, ever sleep. My sleep is disturbed and I rarely get into that nice, deep REM sleep that makes you feel fresh as a daisy because my legs are twitching away while I sleep.

The main outcome of this is that the consultant thinks I have, as a result of the hypermobility and way too elastic blood vessels, something called PoTs (Postural Tachycardia Syndrome). In simple terms, this is an abnormal response by the involuntary nervous system to becoming upright. This part of the nervous system is in charge of all bodily functions that we don’t have to think about, such as:

Heart rate and blood pressure
Digestion
Stress response

Basically, I stand up and my body thinks “HOLY SHIT, WHAT ARE YOU DOING”. Because of my stretchy blood vessels, too much blood rushes down to my legs leaving none for the rest of me….so my body then wants to lay back down again, quickly, and not do anything for a while.

Anyhow, more can be read about it if anyone is interested, here.

So I think I explained that all ok, considering.

I’m now waiting on a letter and yet more wonderful test to confirm that the doctor is right. It’s all a bit much to take in and get my head around as not an awful lot is known about it. I will just be glad when I have an explanation as to why I always feel like crap.

At least now I know that it wasn’t all in my head, as my GP was trying to imply.

Gluten and Dairy Free Banana and Chocolate Loaf

cakeThis is no magic recipe, I just adapted the one in my Primrose Bakery book with gluten and dairy free products.

I’ve been finding it hard to find nice, sweet things to have now that I bascially can’t have a lot at all, so I thought I’d take a shot at making something myself…and I’m very glad I did. Of course if you don’t have an annoying allergy, just follow the recipe using normal ingredients. Also if you have no problem with dairy, I’d recommend using proper butter and a good quality dark chocolate.

So here it is!

Ingredients
Makes one loaf (8-10 slices)

125g Pure sunflower spread
250g golden caster sugar
2 large eggs
1 teaspoon good quality vanilla essence
250g gluten free plain flour
2 teaspoons gluten free baking powder
4 ripe bananas
175g dairy free chocolate

One 900g loaf tin

Method

1. Pre-heat the oven to 180°C, and grease and line the loaf tin with baking paper.
2. Cream the butter and sugar together, beat in the eggs one at a time and then add the vanilla essence.
3. Sift the flour and baking powder into the mixture and stir until combined.
4. Mash the bananas and chop the chocolate into small chunks, then stir them into the mixture.
5. Pour the mixture into your loaf tin and bake in the oven for 50 minutes.
Tastes great served warm or once cooled it can be kept for a few days in an airtight container.

Enjoy!!

Serendipitously

You always get those complete arsehats, don’t you, you know the ones with their “You won’t find someone until you stop looking” and “It will happen when you least expect it”. We sit there and roll our eyes and think ‘oh do fuck off’….. but you know what (and I would never ever say this to one of them), it’s true.

I had honestly given up. After a string of utter arseholes – a lot of which you knew about – I’d just got to the point where I knew they were taking me for a ride, I knew I was letting them walk all over me and I wasn’t prepared to take it any more for the sake of having someone, anyone.

I would have rather been alone, and happily alone, than spend one more day wondering why they hadn’t text me back or if I’d said something to accidentally make them think I liked them more than I should.

I was happy with my own company, in my little flat with my little cat. The epitome of cat lady.  Continue reading

Age old problem

In two days time, I am 29. I don’t know if I can adequately put into words how unhappy I am about this fact. Let’s just say, I’m firmly ignoring it and pretending that I’m still somewhere around the 24 mark.

Don’t worry too much, I’m not scheduled to freak out until I get to 30, that’s when things will unravel and I will really lose my shit. I’ve got a year to go yet.

My main problem is, I don’t feel like I’ve done much with my life up until now. I haven’t achieved much of anything.  Continue reading