Category Archives: Let’s get chronic

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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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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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.