Category Archives: M.E

M.E Awareness Week 2015 – 10 Things You Didn’t Know About Living With Myalgic Encephalomyelitis

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M.E Awareness Week 2015 – 10 Things You Didn’t Know About Living With Myalgic Encephalomyelitis

For M.E Awareness Week 2015 I thought I’d give you a little glimpse into the world of M.E…

  • I’ve been living my life with M.E for company since August 2011. It appeared after a bout of swine flu and settled itself at a mild to moderate level quickly afterwards. It’s also known as Chronic Fatigue Syndrome which I much prefer as a label, not least because it’s easier for people to understand.
  • Although chronic fatigue is the headline act, M.E features a whole host of supporting characters such as pain in the muscles and joints, a random inability to control your own temperature and brain fog (technical term for your mind failing to work according to the instructions)
  • 25% of people with M.E are so severely affected that they are housebound, wheelchair bound or bedbound. I’m lucky enough to be able to goad my body into functioning semi-normally, although it is often feels like I’m carrying a five pound sack of spuds on each shoulder whilst a mouse nibbles on sections of my brain.
  • Despite Denise Robertson claiming on ITV’s ‘This Morning’ that “M.E doesn’t last forever”, it can and often does. Only a small percentage of people manage to regain their former level of functioning. I like to think I might be one of the small percentage. As Henry Ford said, “If you think you can do a thing, or you can’t do a thing, you’re right”
  • Living with M.E is like trying to use a mobile phone with a faulty charger. My body battery is never more than 50% charged and if I fling myself around doing too much, my power dies and I’m unable to function. Managing and conserving low energy levels are the key to coping with this condition.
  • The hardest part of having M.E at my level is that you feel dreadful but look fine. Unless you become a chronic illness bore and constantly regale people with tales of bodily woes, it’s difficult to explain to people why you can’t do everything you want and need to do. It’s even more difficult to explain why you can’t do everything THEY want and need you to do.
  • M.E has taught me to prioritise and organise to within an inch of my life, otherwise important jobs would never get done. I was rubbish at this before.
  • It’s also taught me to say goodbye to the futile practices of perfectionism and being competitive. I was never ‘good enough’ before I got M.E, but now I’m happy with the simple things such as holding down my job and managing to put a few decent outfits together while I’m at it.
  • Having M.E has also helped to separate the wheat from the chaff where friends are concerned. Not everyone can cope with a friend who is brilliant at emails but who doesn’t have the energy to materialise in person very often. Luckily, I’ve now got a fab core group of friends who don’t judge me for my methods of keeping contact.
  • You can still have fun with M.E. It’s not as easy and you might have to redefine what fun means, but fun is out there if you look for it. My pre-M.E methods of fun included dance, long walks and endless socialising. Now I enjoy watching dance clips on YouTube and chat with friends online or through emails. I might not be able to walk in the park and look at nature every day, but I can grow plants and look at those instead. I’m currently having a lot of fun trying to get my new Amaryllis plant to grow in a perfectly straight vertical line. M.E might consume my body, but it doesn’t consume my mind or my life!

*This post has also been published on Huffington Post UK’s blog section – you can read it here:-

http://www.huffingtonpost.co.uk/laura-roche/me-awareness-week_b_7252308.html

10 tips to keep your sanity when you have chronic health problems

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Living with chronic health problems and long-term illness can push you to your limits physically, which in turn, can send you over the edge mentally. Having lived with Neutropenia and M.E (Chronic Fatigue Syndrome) for many years now, I can verify that these illnesses have threatened to crack my sanity and spirit like a boiled egg shell hit repeatedly with a spoon.

In order to get through the rest of my life with some semblance of my mental health intact, I’ve developed several ways of coping and getting by that I’d like to share with you today.

1) There’s a lot of advice floating around about ‘accepting’ your situation and coming to terms with it and that’s all very well and good if you can do it. After 17 years of illness however, I am no closer to accepting it than I was at the beginning. I’ve now decided to accept that I can’t accept it and deal with that instead. I believe it’s healthier to feel all your feelings, even if the so-called negative ones such as anger, frustration, bitterness, envy, loss or regret. What I’ve discovered is that these feelings are fluid anyway and it’s impossible to stay feeling any one thing forever. If I allow the feelings to come without saying ‘I should have accepted this by now!’ they usually pass of their own accord and then I can get on with making the best of things.

2) Work out what your physical and mental limits in life are and stick to them. This is a lot more difficult than it sounds, but I’ve learned the hard way that ‘pushing myself’ is no longer an option. I’m done with payback and exhaustion from not listening to my mind and body.

3) In order to achieve 2) do not listen or pay attention to anyone who thinks you should be doing more. This is also a lot more difficult than it sounds but unless someone has the exact same conditions as you which affect them in the exact same ways, they have no place advising you on anything.

3) Forget about rigid time-management and organising your life. I tried this for years after I first got sick thinking it would help me maximise the time when I was well. What happened was that I had to change my plans and alter deadlines so much due to the unpredictable nature of my illness that I ended up feeling like a failure who couldn’t get things done. As difficult as it sounds, ‘going with the flow’ is a better mental approach for me than putting expectations on myself that I can’t live up to.

4) Prioritise instead and then you will be able to live with the lack of order in your life. My priorities are my health/self-care, work, partner, friends and family ( all at the top together ) Sadly, my goals and ambitions have to be lower priority because it’s just common sense that I can’t do everything at the pace I want to. Hence the sporadic blog posts, the years it took me to start getting my writing published and the YouTube channel that I’m desperate to develop, but which is moving along at a snail’s pace. Everything else like housework, decorating, crafts, reading etc is lumped together at the bottom of my priorities because if I kept up with them at the level I would like, the top priorities would suffer. Travel is nowhere on my list of priorities, even though if I was well I’d love to travel more. It takes so much energy that it is permanently on a back burner. Even going away for a few days results in payback and massive exhaustion. Trying to do everything will definitely send you insane.

5) If anyone has the audacity to say to your face they don’t believe your illness exists or that you aren’t really that sick, there are two simple steps you can follow. One is to talk to them and try to educate them about your illness and if this doesn’t work, you can go straight  to step two which is to remove them from your life via the nearest available exit. If that’s too brutal for you, try a gradual ‘phasing out’ so that you see and talk to them a lot less. These people are called ‘naysayers’ and they are one of the biggest threats to your sanity

6) Indulge yourself often. Living with health problems is 20 times more difficult than living a normal life, so regular treats are essential to stop insanity showing up on your radar. For me it’s clothes and I don’t care if I have too many or don’t need any more. I work very hard to keep my job whilst feeling awful and so if I spot a new leopard print item, I’m having it.

7) NEVER compare yourself to anyone else who is well. Comparing yourself to someone who is well is futile and also a bit silly. You might as well open the door to insanity and offer it a cup of tea.

8) Don’t feel you have to put on a brave face worse still, be ‘inspirational’. All of this can take energy and make you more ill from the effort.

9) But don’t moan a lot either, because this can also be very draining, for you and everyone else.

10) ‘Big up’ yourself and remember to congratulate yourself regularly on the achievement of surviving health issues. Not going insane takes considerable effort which can’t be underestimated. I said ‘well done’ to myself nine times yesterday!

How do you know when to come off anti-depressants?

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Medication can play a vital role in managing mental health issues. I’ve been on an anti-depressant called Dosulepin since December 2009 and at the end of last year, felt stable enough to try to come off it.

However, my GP told me that Dosulepin is one of the hardest anti-depressants to come off. It’s an older, tricyclic version and there aren’t many people still on it. Which begs the question, ‘Why was I put on it in the first place?’ I don’t suppose I’ll ever know; I was at a different practice in 2009 and was in no fit state to question the doctor at the time.

At Christmas I was taking 150mg a day and my GP advised a very slow and gradual reduction by 25mg to start with. Imagine my surprise when I felt like a complete mental raving lunatic within a week. It was so unbearable that I immediately went back up to 150mg.

A few months passed and I decided to have another go at reducing the dose. I dropped by 25mg again and the exact same thing happened. I decided to try and withstand the withdrawal effects and mustered up all my strength and determination. I had two weeks of intense mood swings, feeling unsettled and bad nightmares, but sweated it out as I can be very stubborn and didn’t want to be beaten by a tablet. It was hard to separate the feelings from my sense of ‘myself’ but tried to see it as a purely biochemical response; a change in brain chemistry that was bound to make me unsettled. It didn’t mean I had lost control or slipped back into depression. Things stabilised at the end of the second week and it seemed like my body had become used to the change so I dropped my dose by another 25mg. This immediately made me feel I had been thrown into turmoil again and I noticed that my anxiety, which had never been far away, had now reared its head again with a vengeance.

It’s been two months since the last reduction and although my GP is keen for me to keep dropping the dose, I now don’t feel confident enough to attempt this.
I realised there were a lot of psychological issues coming up that I was confused about. For one, I can’t remember what I was really like before the anti-depressants. I don’t know what I will be getting back to and I don’t know what my ‘normal’ was. I’m not sure if I’m permanently changed now from life experiences and simply being older and I don’t know how I will know when I am ok enough not to need the tablets.

I do remember that I always felt things intensely, always felt anxious  and always struggled with low moods, even without the bereavement that pushed me over the edge and onto anti-depressants.

During the last two months of being on 100mg, I’ve definitely felt different and not in a good way. I’ve settled into feeling generally low and noticing that I’m struggling a lot with my Neutropenia and M.E. My health problems have always been difficult to cope with, but I have a new sense that I’m at the end of my tether with them and can’t take it any more. They are lifelong conditions though, so I need to find a way around this! But do I need to have come off the tablets completely and had a ‘settling in’ to the new brain chemistry period to really know how I am going to deal with things?

The way I’m feeling right now is that I’m having to constantly draw on everything I’ve learned from counselling and CBT in the last five years to keep a grip on my mood. My anxiety can be all-consuming and whether it’s a biochemical withdrawal reaction or not, it is difficult to cope with. It’s knocking my confidence and it’s demoralising that this is how I am without a third of my tablets. After two months, I’m obviously through the turbulent upheaval of the last reduction and this is what I’ve been left with. I’m thinking maybe I’m just one of those people who needs medication and I should not try to reduce the dose further. I don’t have a problem with that, but Dosulepin has some pretty nasty side-effects if you take it long term and if I’m going to be on tablets, I don’t think these are the best choice.

I’m intrigued to know what’s on the other side though and to see if I could cope without them. I’ll never know if I don’t try. I don’t want lack of confidence to stop me trying, but I also don’t want to take risks with my mental health, as its taken most of the last five years to rebuild it.

Ultimately, I want to feel as ok as possible and as though I am coping and I don’t mind taking tablets to achieve this. I don’t want to come of the tablets for the sake of it, or stay on them for the sake of it, but this period is a useful experiment in seeing where the boundaries are between the tablets and my own mind. I’m surprised it’s so hard to reduce the dose and also surprised that a lot of my old ways of feeling have resurfaced so for now, I’ll tread carefully and think long and hard about whether to drop the dose any further.

Has anyone else experienced similar difficulties? How do you know whether you should come of anti-depressants or not?

 

Trigger happy.

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If you are suffering from long-term mental health problems, you will probably find that any episode is preceded by some sort of trigger. Identifying your own triggers can be a useful skill in avoiding or minimising the severity of an episode. It can take time to work out what sets you off, or makes you feel worse. But self-awareness can be the most valuable tool at your disposal when managing your condition or dealing with an oncoming crisis.

It’s not selfish to spend time working out what makes you feel bad. It’s taking responsibility for yourself and your mental well-being. Sometimes the triggers may be obvious, or it may seem there is no particular cause for the way you feel. I’ve found that if you look hard you might find triggers so subtle, your mind didn’t acknowledge them at the time.

Therapy can help you work out what triggers your moods and behaviour, but long waiting lists and limited sessions could mean you only scratch the surface. It can only be as successful as the honesty and self-awareness you bring to the sessions anyway. It can be useful to do some self-analysis before your first appointment and have a list of ideas about why you may be feeling the way you do.

Triggers can also change over time. The things that trigger me to feel anxious or depressed now are not the same as when I was younger. I am relatively well at the moment, or ‘sub-clinical’ as the medical profession would say. This has given me an excellent platform to be able to look back over various periods of past depression and anxiety to work out what may have set them off. In doing so, I hope I can learn from them and possibly avoid any severe episodes in future. I don’t see this as ‘dwelling on the past’ or not being able to move on; it’s more of an evaluation of my experiences and self-protection insurance policy.

Everyone will have different triggers, but in the spirit of honesty and sharing, I’m going to list some of mine and show how identifying them has led to me being able to make some drastic positive changes to my life.

The main trigger to my most recent bout of depression and anxiety was my Dad dying suddenly, 5 years ago. Of course, it’s perfectly understandable that this caused me a lot of problems; it was a massive shock to the system and it was normal to be struggling as a result.

What I hadn’t accounted for was the aftershocks and complete inability to function which followed. His death set off a chain reaction of problems and although I sought medical help, I don’t feel that I received the right support. It’s only now, five years away from this that I can look at it rationally and think that all my symptoms seemed to match up with post-traumatic stress disorder. I really wish that one of the millions of doctors I saw at the time had diagnosed this correctly.

The practical upshot of this was that I lost all ability to control my moods and function normally. I was hideously depressed and suffering from severe anxiety and flashbacks, whilst simultaneously trying to keep my job and appear ‘normal’.

Thoughts, situations, people and events which I would normaly be able to deal with were triggering horrendous lows and anxious meltdowns. I was a wreck for years.

I’ve had to learn almost how to ‘re-wire’ my brain so that I could function again and experience some sort of joy out of life.

Part of this was the natural process of getting over my Dad’s death, but most of it was identifying the numerous triggers which were causing the aftershocks and meltdowns. It was difficult, especially when I felt that I was constantly on one of those death-defying rollercoaster rides. The main triggers are listed below:-

1) Anything connected with death. Of course, death is all around us so I’ve had to learn to cope with the idea of death as a part of life. I’ve accepted that I will always be over-sensitive to anything death related and be aware that it is a major trigger. For this reason, I avoid any funerals that it is not strictly necessary for me to attend. I don’t visit my Dad’s grave and I don’t mark the anniversary of his death. I turn over the TV if there are any references to dying or death and I don’t allow myself to ruminate about it. I tell myself that although death is traumatic, I will be able to get through it if anyone else dies because I’ve survived this experience. Really I could do with everyone staying alive for at least 5 years to give me a break from it. People, please try your best!

2) Being tired. Unfortunately, I am tired all the time as I have M.E. I’ve found that this can disturb all my carefully rewired brain settings in an instant. When I’m tired, I have a lot less control over my moods. My brain likes to gravitate towards topics I’d rather not think about. Thoughts, images and feelings come into my head in a random and disjointed way and it makes me feel confused and out of control. There is a level of extreme tiredness that I have only experienced since I got M.E which is similar to feeling drunk. This is a bad and not enjoyable drunk sensation that makes me feel like throwing up. Once it has gone this far, I have about half an hour to get to bed otherwise an extreme anxiety episode will follow that can go on for 12 hours or more. Now I’ve identified the damage that tiredness can cause, I prioritise rest, relaxation and sleep. As soon as my trigger radar picks up progressive tiredness, I act quickly to avoid my moods worsening. If I find myself stuck in the ‘drunk zone’ whilst travelling or in a situation where I can’t go straight to bed, I tell myself that the thoughts, feelings and mood I am experiencing are tiredness related and not a real reflection of how things are.

3) Being asleep. I know this seems crazy because I need a lot of sleep to cope with my M.E and mental health problems as detailed above. But sleep and especially dreaming seem to totally mess with my head. Again, it seems to disturb all the rational re-programming I’ve done in the day and my brain sees it as a chance to go on a frenzied free-for-all. The dreams I have are bizarre, disturbing and downright fucking insane. I had one last week where a man came and removed my brain and cut it into 50 pieces. He laid them all out in rows of 10 and then started eating it, piece by piece. I felt that ‘I’ was in a piece of brain in the back row, but when he ate a chunk, I could feel pain in all the pieces. Luckily my partner heard me making weird noises and woke me up. It makes me so mad that I have to dream shit like this. I don’t watch horror films or anything remotely disturbing. It’s all a product of my own inscrutable head. I thought my brain was supposed to be on MY side? I wish I could dream about kittens and fields of flowers. I deal with this by forcing myself to get up and on with my day. My normal routine seems to rebalance the order of things and I try not to dwell on these stupid night terrors.

3) Feeling alone or lonely. This is a trigger I’ve had all my life, although it has picked up it’s intensity since my Dad died. It’s an interesting one because I do love my own company and need a lot of time to do my own thing. Plus,I have a partner, family and friends I can talk to along with numerous Facebook pals and support groups I belong to. So it’s been tricky getting to the bottom of how and why feeling lonely is a big issue. I think it’s roots are in my teenage years, when due to extreme shyness and lack of social skills, I spent a lot of time in my bedroom. Some of it comes from years of not being able to talk about my depression and anxiety; from feeling like I couldn’t be myself with people or that I had to hide my problems. I think some of it is also due to spending excessive amounts of time at home alone with Neutropenia related illness. I’ve realised that as soon as I start feeling ill, it automatically triggers the lonely feelings because I don’t know how much time I’m going to spend cut off from the world. As soon as I feel a sense of loneliness coming on, I force myself to interact with people. I remind myself of all the support I have around me and I put the TV and computer on if I’m stuck at home ill. Seeing humans on telly and chatting on Facebook is sometimes enough to get me through if I am going through a tough time.

4) Being surrounded by people all the time. I know, I’m a mass of contradictions! This can send me mental just as much as too much me-time. It manifests itself as extreme irritation and claustrophobia. I’m still working on getting the balance right between company and solitude. But I’ve realised there is nothing wrong with taking time out for a solitary walk if on a group holiday, or taking lunch alone if work is busy and frenetic.

5) Being bored. I get bored very easily and it is an absolute recipe for disaster. My mind will instantly wander onto all kinds of unsuitable topics and mental mayhem will ensue. Popular choices include the meaning of life, the nature of reality and why are we here? As I’ve spent most of my life pondering these weighty issues and not arrived at any conclusions, I’m not allowed to think about them anymore. I realised that all the great thinkers, philosophers and scientists had already spent years on these topics and not arrived at any answers, so what’s the point in me wrecking my own head over it all? If I get bored and these thoughts come into my head I tell myself to stop it. I remind myself that life is for living and go and do something less stupid instead.

6) Music and background noise. This one took me a while to pick up on as it is what I’d call a subtle trigger. I realised I can feel suddenly depressed or extremely agitated if there is a moving soundtrack on TV or a sad song playing on the radio or in a cafe. Anything in a minor key can set me off, even if the music is technically beautiful. In the past I loved this kind of music, but post Dad’s death, it triggers extreme mood swings. Ditto any repetitive noise, such as roadworks,traffic, phones ringing and the fan in our bathroom. I can’t avoid all of these things but being aware of their effect is very useful.

7) Changes in routine. I know this may seem an odd one for someone who is easily bored, but I function best these days when everything is more or less the same. I’ve always been a creature of habit but this has now been taken to the next level, like everything else. I think it’s again due to the shock of my Dad going. He was literally here one minute and gone the next. My subconscious has obviously decided that everything now must be more or less predictable to offset this. Work days are now bizarrely, the times when I feel most stable. The whole day follows a set routine and structure wheras being off on holiday, or going away does not. I’m annoyed that it’s now ‘fun’ things that cause me massive problems and mood swings. I used to love being off work and could quite happily mill around for the whole summer break. I still like it, but I’ve learned I have to implement a different routine and can’t float around at leisure. If I let the days go by, I end up feeling lost, disconnected, anxious and adrift. Going on overnight trips or holidays has become fraught with difficulty as the transition brings on severe anxiety. It doesn’t matter how much I’m looking forward to it, I can’t avoid being up all night with anxiety before I go. The first night on arrival is usually fucked too, as I adjust to a new routine. I’d never let it stop me, but it’s a fucking pain in the arse and very debilitating. I tell myself I’ll be fine when I get there and will enjoy it because this is always true. I never want to become one of those people who is ruled by their anxiety. So what if you arrive on holiday or to stay with someone looking a bit mental? It’s better than not arriving at all.

These are the main triggers that I’m dealing with right now. There are more, but I don’t want this post to resemble the length of War and Peace. I’m delighted to find that writing about triggers hasn’t triggered anything nasty, so this is a plus point! Why not have a go at writing a list of your own?

Home management tips for people with no energy

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One of the most frustrating things about having long-term health problems is managing a house. If I had it my way, I would live in an immaculate palace. The surfaces would gleam, rooms would be tidy and the air would smell of fresh spring flowers.

Sadly, this is not the reality. The amount of compromises you have to make in managing your health condition(s) can be huge and extremely depressing. It never fails to drive me nuts when I have to go through yet another illness period in a house that I am unable to clean. I’ve had to accept I can’t have things the way I want. I’m constantly compromising on the standards I would like to live by.

Ultimately, it’s about priorities and assessing what’s really important. Health has to come first, and if I don’t have the energy or stamina to look after the house, there is no point pushing through it because I’ll only make myself feel worse. In the past I would make myself completely miserable by saying things like ‘I’ve got a messy, dirty home. I’m a complete failure as a human being.’ This just made everything worse. Not only did I have an illness that wasn’t my fault, I was calling into question my whole worth as a person!

Over the years I’ve learned to give less of a fuck about housework and stuff. I’ve also devised a few methods of creating the illusion that the house is cleaner than it actually is. Here are some of my top tips for home management when your body is ravaged by shit that’s out of your control.

1) Accept that you can’t have things exactly the way you would like. This can be difficult, but I re-frame it as ‘I’ve chosen to put my health first.’

2) Establish what you cannot compromise on and prioritise this. For me it’s having the dishes done and making sure the bathroom is clean.

3) Think about what you notice when you go to other people’s houses. I don’t go in looking for dirt and dust. I notice whether a house is comfortable and homely and whether I feel relaxed there. I do notice when a house is super clean and spotless because I feel slightly uncomfortable and like I might get in trouble if I make a mess.

4) Dust is unpleasant, but look hard at where it really accumulates. I’ve noticed that you can only see it on glass, the TV or dark surfaces. So I dust these more often and leave the rest. You will be surprised at how many weeks, or in my case months you can get away with not dusting white surfaces or pine wood.

5) Changing pillowcases once a week gives the impression of a fresh bed without having to destroy yourself changing sheets and duvet covers as well.

6) Keep all plants well watered and attended to. Nothing says trampy home like a wilting or brown-leaved pot plant. A house full of thriving greenery gives the illusion you are more on top of things than you actually are.

7) If you have piles of stuff that needs organising, sorting, sewing or dealing with, hide it in a cupboard until you are able to tackle some of it in small chunks. ‘Out of sight, out of mind’ is possibly the greatest saying applicable to my home management approach.

8) If there are any areas of the walls needing attention, such as patches of dirt, damp or peeling wallpaper, just cover them up or hide them with pictures and furniture until you have the strength to tackle things head-on.

9) Keep a handful of Sympathy or Get Well Soon cards stashed in a drawer. If faced with a prospective visit from people you feel may judge your living situation, whip them out and write them to yourself. Explain that you have been too ill to sort the house out. You must have been if people sent cards!

10) Assess how much guests need to visit. I’d love to invite people more often, but I find it hard to relax when I haven’t been able to clean or tidy the house. Sometimes it’s just easier to go to their house or meet elsewhere. If you haven’t been to my house for a while, or ever – this is why!

11) Buy clothes that don’t need much ironing. I live in soft, stretchy materials and actually can’t remember the last time I ironed anything. If you have to wear shirts, iron only the collar and cuffs and put a top over them. Never, ever iron bedlinen. The creases drop out overnight anyway. Or put a throw over the duvet cover if any residual creasing remains.

12) Assess your laundry situation. Do things need washing all the time? You may think they do, but give them a sniff and you might change your mind. Anything that is not directly in contact with your body can be left for a lot longer than you think. I like a layered look, so I’ll wash a t-shirt and leggings I’ve worn, but not the dress I had over the top.

13) Assess how much shopping and cooking you need to do. It’s a long-standing joke that I eat at the carvery on Tuesdays and Fridays every week. Much as I enjoy a carvery, it happens mainly because I don’t have much energy to shop and cook. The carvery is also a lot cheaper than it would be to buy roast dinner ingredients (£4.19) and it’s a relatively healthy choice. Shopping and cooking also results in washing up; yet another chore which I’ve managed to wipe out with this arrangement. When I do shop, I opt for quick to prepare, healthy items. Then if I’m too fucked to make a meal, at least I’m looking after myself as best I can. My favourite go-to choices are Uncle Ben’s Express Wholegrain rice (microwaves in 2 mins), ready cooked prawns and ready to eat smoked mackerel, salad, tons of fruit – especially chopped fruit salad, vegetables, houmous, natural yoghurt, nuts and seeds, oat cereal bars, fresh soup, rice cakes/oat cakes, Innocent smoothie and muesli.

14) Only hoover the bits of floor you can actually see. Don’t move heavy items of furniture to hoover underneath. Refer to the ‘out of sight, out of mind’ philosophy.

15) Use lamps instead of overhead lighting. Low light = less visible dirt.

16) Change your expectations of yourself and the timescales you give yourself to complete tasks. As I mentioned in my previous post, ‘The Power of Small Goals’, I am a bugger for having lofty and unrealistic ambitions. This also extends to what I’d like to achieve at home. If you would like everything in your cupboards sorted out, as I dearly would, don’t expect you can do it all in one day. Divide up the jobs into manageable chunks and pick one or two at a time. Chip away at the ongoing jobs and you will be surprised at how satisfying it can be to reach a small goal.

17) Open windows daily, even if it’s Baltic outside. It will freshen your home and hopefully blow some of the dust away.

18) If you are too ill and fucked to do anything, it can help to think of the ‘bigger picture’. I remind myself that in the great scheme of things, having a clean and tidy house isn’t that important. I’m pretty good at assessing how much I can realistically do now, so if there is limited energy, I’d rather spend it on doing something more interesting instead.

If any of you have any more tips I could add to my list, please rush them to me on the immediate!!

The power of small goals

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I’ve always been someone who likes to set goals. They are usually big, if not grandiose and cover all aspects of my life. The timescales set to achieve them are just as ambitious.

I’ve always thought you can achieve anything if you put your mind to it. I think it’s important to know what you want out of life and live to your full potential.

I think this ties in with being a perfectionist. I’m someone who pushes themselves to the extreme.

I’ve achieved a lot in life, but one thing that’s always annoyed me about myself is that I think the goal setting is enough, without planning how I will achieve said goal. I have vague ideas and will generally head in the right direction, but find it hard to work out a logical plan showing how I will get there.

I’m also not very good at accounting for life getting in the way.

Or accounting for whether the goals and timescales are realistic.

The goals are also in a fixed and immoveable state, and I find it hard to be flexible over what would constitute achieving the goal.

Then when there is no sign of me achieving the goals anytime soon, I beat myself up and feel horrible.

For the last 5 years, life has been very difficult indeed. For those who have not read my earlier posts, my Dad died suddenly and I suffered a period of severe Depression and Anxiety. My ongoing health problems (Neutropenia) were even more difficult to manage than usual during this time and just when the mental health problems began to improve, I got diagnosed with M.E.

For those who are not familiar with it, M.E stands for Myalgic Encephalomyelitis and is otherwise known as Chronic Fatigue Syndrome. I can sum up the condition by saying it involves feeling totally fucked all the time. You have less energy than a corpse and your brain becomes enveloped in a thick invisible fog which makes it hard to carry out any kind of joined-up thinking. You are essentially fucked over in mind, body and spirit.

Although the official medical consensus was that the M.E resulted from a bout of swine flu, I’m convinced that it is the result of years of strain from severe Depression and Anxiety.

This period of bleak wilderness was largely defined by a complete lack of control over my moods, health and energy levels. I wasn’t too concerned about achieving the big goals I’d set up for myself, but it was devastating that I seemingly couldn’t manage even the simplest tasks.

It’s always been important to me no matter how incapacitated I am to achieve something every day, even if it’s just doing a sink full of dishes. I hate to feel that I’m just existing. It makes me feel like a useless blob of nothingness. I’ve never been any good at relaxing either; I don’t believe there is an ‘off’ switch anywhere in my brain.

There is no cure for M.E, but I was offered NHS support which involved attending a management programme. Through this excellent support, I started to see that my attitude towards myself and my unrealistic goal setting was actually making everything worse.

I was taught that the more I pushed through M.E, the worse it would get. It was unbelievably difficult to accept. I had to learn the limitations of my energy levels, assess them on a daily basis and not go beyond them. If I did there was ‘payback’, where I would end up fucked for days or weeks afterwards.

It’s only now, 2 years after diagnosis that I can accept it was the wake-up call my body and mind needed. I had to accept I was overloaded with stress and that my body had manifested this as illness. Any unrealistic goal setting, or doing too much had now become a punishable offence.

The therapist I saw during this time helped me see that I didn’t have to constantly achieve things at every stage of my life. She said I had achieved things in the past and would probably achieve things in the future, but for now, maybe I wasn’t able to achieve much.

I realised that if I was going to get through this terrible time, I had to completely change my expectations of myself and what I could realistically accomplish. It was difficult, because it felt like I was changing a fundamental part of who I was. I was worried I would become lazy without the grandiose expectations of myself and the desire to push through problems no matter what. I worried people would think I wasn’t trying hard enough.

At first it didn’t sit well at all. I was signed off work sick and too ill and exhausted to go out much. It seemed my body had came to a complete standstill. I was stuck in the house looking like shit, feeling like shit, surrounded by shit. The fact I had no strength to deal with any of it sent me mental.

There was no way I’d admit to how bad things were or ask for help. My partner knew obviously, but I wouldn’t ask him to do things in the house as I liked the way I did it better.

At heart I am a blitzer – if something needs doing, or if I start a project, I carry on until it’s finished. I sulked and felt bitter that I couldn’t blitz the house and the many other things on my ‘to-do’ list. I ignored the advice I’d been given and did stuff anyway, even though it wiped me out for a disproportionate amount of time afterwards. I wouldn’t do a small part of a job because it annoyed me to leave things unfinished. I felt a sense of entitlement that I ‘should’ be able to do what I want, the way I wanted to. So, for at least 6 months after the M.E diagnosis, I was in a weird state of knowing I had to change, but feeling unable to do so.

The irony is that part of my job involves helping people to break down tasks into small manageable goals. I’m very good at doing this with other people’s tasks, just not my own!

One of the main things pissing me off was that I couldn’t read books the way I used to. In the past I could finish a book in a weekend, but now it takes 6+ months. I have to keep re-reading the first chapter because I’ve forgotten what’s happened. I decided to try the ‘Quick Reads’ series, which were much shorter and manageable. One book I read was called ‘How to Change Your Life in 7 Steps’ by John Bird (founder of The Big Issue) He talked about the concept of tackling goals in 3% stages. It didn’t matter what the goal was, just estimate what 3% of it was and do that much every day.

I had a go, even though it felt silly. I wanted to re-organise the bedroom but was reluctant to tackle it in case I did the whole thing and ruined my energy levels. I deduced that 3% of it constituted the piles of shoes everywhere. Half an hour later I’d finished arranging them into hanging organisers and the floor was clear. The incredibly difficult part about this was stopping. I felt desperate to carry on with another task and it was mentally painful to resist.

The next day I made a pile of clothes for the charity shop. The day after I tidied some drawers. After a week I could clearly see improvements and I began to feel a sense of satisfaction with my achievements. It’s still not finished a year later because it needs decorating from top to bottom, but I know one day it will be.

Another area which bothered me greatly was the lack of writing progress. Everything had ground to a halt when my Dad died, yet I still hankered after the big goals. I wanted to finish a book I’d started, complete a home study course in freelance writing and become a published writer. My therapist suggested I write 100 words a day of anything and see where it went. I remember feeling almost offended when she suggested it; this seemed like such a shitty little goal which wouldn’t go anywhere. But in the spirit of John Bird’s 3% approach and the success of the bedroom project, I began to try. I started early drafts of this blog. I was so pleased when my first blog post came together, even though it took months to write. I realised that my goals connected with writing – to connect with people, engage with them and make a difference in some way, were happening as each post was uploaded. I got instant comments and feedback which verified I was on the right path. I’d been so focused on the elusive ‘publishing deal’ that I was unable to think flexibly about different ways I could achieve what I wanted with my writing.

I think I still have a long way to go. I constantly feel as though I’m having to un-learn everything I’ve known thus far. M.E is a thankless condition, but it’s taught me valuable lessons about listening to my body and working within my limitations.

I’ve learned never to underestimate the power of small goals. I’ve also realised there is a lot of enjoyment to be had on the journey towards goals. Now there are no deadlines, no timescales, just ideas, small steps and progress in the right direction.

Medication Wars – The Patient Strikes Back.

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I think I’ve made a monumental leap forwards in coping with my mental health issues over the last 5 years. However, during the last 12 months I felt like I kept hitting a brick wall in terms of making further progress. The thing with me is that I am never satisfied with ‘good enough’. I will only stop trying to improve my situation when I feel as though I have the best possible outcome. As far as I could see, the brick wall was the physical health problems I have – Neutropenia and M.E. I don’t think I have truly accepted until recently how utterly depressing and miserable it is to live with them. If the causes of my depression were on a pie chart, these illnesses would account for half the pie.

I knew I was not going to live a happier existence unless one or both of the illnesses was minimised to a smaller sized portion of pie.

In my last blog, I spoke of devising my own treatment regime for Neutropenia, which contradicted advice given to me by doctors. My way proved to be MUCH more successful *smug face*.

For the last 15 years, this has involved taking injections with horrible side effects, so that I can minimise my risk of infection and not die from said infections. I take the injections at weekends because they are so debilitating; if I took them in the week I would not be able to work. The side effects include nausea, vomiting, bone and muscle aches, headaches, exhaustion and an overall feeling similar to having flu.

When I first started to intercept the cyclic pattern of my white blood cell count, I took 3 injections every other weekend which gave it a massive boost. I stayed relatively well, but my weekend was obliterated. It was a less than exemplary situation to work all week, be fucked all weekend, then work all week again. I had to try and do all my chores, see people, maintain my relationship and chip away at my writing goals in the good weekend. I missed out on daylight, exercise, interaction, nights out, hen nights, weddings, christenings, shopping, parties and other events if they were on the injection weekend. I entered a book I was writing into a competition and won a weekend residential writing retreat, but couldn’t go on it as it was an injection weekend. There was no cash prize alternative.

As the years went on, my resentment and bitterness grew. About 5 years ago, I decided I couldn’t be arsed with losing whole weekends any more. I decided to conduct some further experiments with my medication and over the next 6 months managed to get down to 1 injection per weekend. I took it every Sunday and dropped working Mondays as I still felt bad the day after. So I was losing 2 days a week but at least every Saturday was my own. This was slightly better but it has been a bastard if I want to go on a trip, visit anyone or if anyone wants to to visit me. I can’t go away for a whole weekend as I’m ill on the Sunday and it’s a waste. I’m not up to having guests for the weekend because I can’t cope with them when I’m ill on the Sunday.

As bad luck would have it, a lot of my friends and family are not based in my hometown and it’s difficult to see them because of the weekend injection issues. Luckily, I only work in term-time and can see people in the holidays, otherwise I would go properly fucking mental.

I’ve estimated that since I got diagnosed with Neutropenia in 1998, I’ve lost approximately 1,200 days to feeling ill with injection side-effects. Then there are the actual illnesses and infections I’ve had on top. I was going to work out a separate figure for those, but calculating the first sum has broken my heart somewhat.

I’m now at a point where I can’t be arsed losing 2 days a week any more and feel up to another round of experiments and tweaking my medication. My doctors never inform me of any updates or suggest anything new, but thanks to the miracle of the internet and Facebook support groups, I am fully au fait with improvements in the world of Neutropenia.

It seems my U.S Neutropenic friends are able to take the injections I’m on in a very small daily dose, so small that the side effects are greatly reduced. This has been widely recommended and supported by the Severe Chronic Neutropenia International Registry, who are based in Washington, USA and are currently overseeing developments in treatment.

Sadly, these injections are not available in the UK, but that hasn’t stopped me trying to get my paws on this daily dose booty for about a year now.

I’ve been given the knock-back by five different consultants last year, who have refused to even look into it for me. One hinted at costs, but that seemed to be the only factor I could see which was realistically hindering my progress.

I was assigned a new consultant in January this year and finally, I seem to have found someone keen to support and help me with my medication issues. He concurred that there was no daily dose injection in the UK but offered to try and find a smaller dose of a bio-similar medication to the one I am currently taking. By the power of Google he found one in 5 minutes! But, the hospital wasn’t licensed to stock it so he had to put in an appeal to his managers.

Lo and behold, the entire haematology department is not shit and my request was authorised!

On Sunday, I had one of my new injections for the first time and I am glad to be able to share this special moment with you. The dose is approximately a third of my old injection, so I’m taking a risk in reducing my medication. However, all the improvements in treatment that I have achieved thus far were as a result of risk and experimentation.

I’ve still had side effects. But I managed to write a rough draft of this blog and clean the bathroom. This is a first for an injection day!

I’m excited and hopeful.

However, I won’t be stopping until I’ve got the drugs the Americans are on.

How to juggle health problems

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I am laughing at my own title because I’ve made juggling health problems sound like something you can do after reading one blog post. It isn’t easy of course, but over the years I’ve learned a thing or two and I wouldn’t mind sharing some of it with you today.

Life can be a right bugger. As if being predisposed to mental health issues wasn’t enough, my body is also wracked with physical complaints. I was diagnosed with a rare blood disorder called Neutropenia in 1998 and then M.E nearly 2 years ago. Neutropenia is a condition where the numbers of bacteria fighting white blood cells (neutrophils) are very low. This means I am prone to constant infections and I’m unable to fight them off. I have to take injections which boost my neutrophils, otherwise I could end up seriously ill, or dead. The injections have terrible side effects and make me very ill too, but I have no choice other than to take them. The M.E invloves crippling fatigue, aches, pains and ‘brain fog’, where I am unable to think clearly. Lovely. Both are lifelong conditions. I’ve often wondered how far they are all interlinked. The neutropenia was deemed to be idiopathic (without known cause) while the M.E was apparently as a result of contracting swine flu.

I’m sure there are environmental and physiological factors at play which determined my susceptibility to these illnesses, but not one single doctor has taken into account the fact that they both appeared after the two major mental health crises I had in my life.

Without wanting to be over-dramatic, I did think it would be a miracle if I got out of these episodes alive. Lo and behold, here I am, but it seems my body is still bearing the brunt of the shockwaves. It’s proof, if any was needed that the mind/body connection is real and tangible.

If I am feeling bad, which is a lot of the time, it’s not easy to work out which of the issues is causing the problems. If I am physically unwell, I automatically feel down too. But sometimes when I’m down I think that seems to make me more ill. It’s a bit of a chicken and egg situation which is hard to separate.

Sometimes it causes more trouble that it’s worth to try and pick out which illness is causing the problem. Better to just accept that I feel shit and see what I can do about it.

My approach to the problems I face is to always keep trying to improve my situation by whatever means. I’ve made huge advances in controlling my depression and anxiety because I’ve had them the longest and been able to try so many different approaches. Ultimately, if you make it a priority to live the best life possible under your current circumstances it can be very empowering. In my experience, there is always something you can do to improve how you feel. I’ve struggled a lot with the Neutropenia, as it’s a rare condition and doctors haven’t known the best ways to treat it. I’m still chipping away at controlling it because I don’t think I have the best outcome I could have yet. The M.E has been a real kick in the teeth as it seems to follow it’s own rules and I’m still learning to fathom its mysterious ways. I know that as time goes on, I will be more able to decipher its patterns and behaviour.

The main challenge of living with multiple health problems is that no one doctor will oversee the whole of your care. I see separate consultants and specialists for each condition, so until we develop a more holistic healthcare system, I’ve decided to be my own doctor.

Yes, a doctor has studied at medical school, but I can access much of the same information they can through the library and the miracle of the internet. Yes, doctors wear white coats but that does not mean they are clever. It means they are stupid, because it’s very difficult to get blood and guts out of whites. It would be way more practical to wear maroon or navy.

Only I can know how things feel for me and how my health problems are interlinked. Plus, I’ve got more time than they have to research rare blood disorders and think creatively about how to manage them.

Every single improvement I’ve made in living with Neutropenia was as a result of my own intervention and suggestions and NOT because of anything a doctor did for me. I’m sure they are much better at dealing with more common problems, but if I had followed their instructions I would still be in and out of hospital and seriously ill. I took it upon myself to experiment with the timing of my injections and would you believe it, I did a better job than they did. My neutrophil count is cyclic – which means it goes up and down, usually in a 3 week pattern. I was told to take the injections when I started feeling ill, but that was already too late. The decline of neutrophils, along with increasing infection meant that the injection was similar to shutting the stable door after the horse had bolted. Yes, they might have stopped me dying but I had fuck all quality of life. I decided it would be better to intercept the neutrophil count on the way down, before it went too low and an infection appeared. I approximated that this would be every 2 weeks. I suggested to the doctors that maybe 3 injections over 3 days at this point would massively intercept the process and bring my neutrophils back up. It did. Within 3 months I had stopped getting severe infections and could resume my daily activities. My consultant declared that I now knew more about Neutropenia than he did.

It’s a mistake to think doctors know everything and know what’s best for you. In my experience they don’t, and you should be careful about handing over your power to them.

As I see it, we don’t have a choice about what happens to us in life, but we can choose what we do about it.

My health complaints have buggered up my life in so many ways and caused me so much grief. It was a massive effort to think about trying to change anything for the better when I was flat on my back in bed after being fucked over by my mind and body yet again. But if I didn’t, what would be the alternative? I don’t want to be depressed and ill forever and miss out on life. I know there are some conditions which you can’t do much about. I’m certainly not advising that people alter their medication or treatment without carefully looking into it and considering all the options. It’s the mindset of change and improvement I am promoting.

No matter what cross you have to bear, ask yourself honestly – have I done everything I could to realistically improve my situation? Are there other options besides the ones that are right in front of my face? Of course, there comes a point where you have to accept you have done all you can. I know I can’t eradicate my health problems completely. But I can take responsibility for them and not expect the NHS to come up with all the answers.

In next week’s blog – read all about how I challenged doctors AGAIN and got results!!

Diet Coke break and awareness raising.

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I thought it might be time for an interval. I assume it can be quite tiring reading about someone’s nervous breakdown so let’s have a rest. I am having a Diet Coke, which is always my beverage du jour.

I will lighten the mood by telling you about a flash of inspiration I had yesterday. It occured to me that there is not enough recognition of people who struggle with long-term mental or physical health problems. I have four lifelong issues. Depression, anxiety, cyclical neutropenia and M.E. I am a very lucky girl. If you have never heard of cyclical neutropenia, don’t worry. Stick with this blog and you soon will!

I’m not saying I don’t receive support because I do. I just think as a society there should be more ways to acknowledge and recognise people who are surviving the feat of endurance known as long-term health problems.

International awareness days/weeks are a great start. However they only happen once a year and usually focus on more common illnesses. For instance, I was glad to share information about Depression and M.E awareness weeks recently, but there is no neutropenia awareness day because the illness is so rare and uncommon. The cyclic neutropenia which I suffer from affects only 2 in a million people. I am part of an online support group and suggested we try and get an awareness day off the ground, but was told by a fellow member we were already lumped under ‘rare illness awareness day’. I’m currently trying to see if there is any way we can get our own day started up.

Spock from Star Trek  said, “The needs of the many outweigh the needs of the few”. I can see that in the case of more common life threatening illnesses such as cancer and HIV, the needs of the many certainly require attention. But why can’t we recognise the needs of the few AS WELL? Surely there are enough resources and interest around to generate some extra publicity for the unfortunate people suffering in their rarity and quietly managing in silence?

My flash of inspiration involves devising a range of greetings cards to support, honour and empathise with people suffering long-term health problems. There is definitely a gap in the market for this. I know there are the basic ‘Sympathy’ and ‘Thinking of You’ style cards but why is there not a specific range which sums up the dreadful scenarios some people go through in life? Death is more recognised in the card industry than long-term health struggles. It is possible to buy every type of card to support different types of bereavement, including details of family member/step-family member or friend on the front with a helpful verse inside, should you not know what to write yourself. ( Actually, I did note one gap in the market here for death of a pet – which I believe can be just as difficult as losing a person.)

I propose something like the following for starters:

“With deepest sympathy on your diagnosis of a debilitating lifelong disorder”

“My thoughts are with you as you continue your struggle with depression”

“Wishing you love and support with the many health difficulties you face”

I know I would be thrilled to receive a card like this. It isn’t easy to communicate to people that you recognise their long-term struggles, so until the little-known or stigmatised conditions get more awareness days/weeks, why not send a card?

I may write to Hallmark with my idea. Or I might just start making them myself.