Category Archives: health

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!

10 things you didn’t know about living with a rare disease

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10 things you didn’t know about living with a rare disease

1) For Rare Disease Day 2015 I wanted to tell you about my rare disease which is called Cyclical Neutropenia. This is a disorder of the immune system which affects the white blood cells (neutrophils) and I’ve had it for 17 years, since the age of 26. I don’t make enough neutrophils to fight bacterial infections and without treatment, a relatively minor infection such as a sore throat could become fatal within 48 hours. Doctors have not been able to explain why I got it. I will have to live with the condition for the rest of my life.

2) The condition affects one in a million people worldwide.

3) I have to take an injection called GCSF every week which boosts my neutrophil count but causes unbearable side effects. Ironically, I find the treatment and the discipline of having to take it to be the worst part of the illness. Once I’ve injected, I’m very ill for two days so I can only have it at the weekends otherwise it would interfere with work. However, the consequences of not taking it are unthinkable. Before GCSF, people with Neutropenia had very little quality of life, were frequently hospitalised with major infections and often died.

4) The fact that this illness is invisible as well as rare is also very difficult to cope with. No-one has ever heard of it and that includes doctors. Nobody knows how to help me and that includes doctors. All the developments in managing my illness have been on the back of my own research and efforts. It might surprise you to know that I would gladly swap it for a worse, more high profile illness to get better support, treatment, awareness and understanding. I would also prefer to look more sick than I do and for the illness to manifest itself in some sort of obvious physical disability. Neutropenia has wrecked devastation on my life, but all I hear is that I’m ‘looking well’.

5) My life is a strange and inconsistent mix of living and being sick. I’m not completely in control of when I can work, see friends and family, clean my house and chip away at my writing goals. I’ve had to accept reducing my hours at work, earning less money, never having the house the way I want it and hoping people won’t mind if I cancel meeting them or cancel attending an important event yet again. Having said that, the times when I feel well are lived to the full. I love and appreciate every single little thing I’m able to do because tomorrow I might be sick or have to take GCSF.

6) I’m eternally grateful for internet support groups, particularly the UK Neutropenia Facebook group. I did the first few years of my illness without any groups like this and it was hard going. Neutropenia is a lonely illness. It’s amazing that now I can just go online and chat with people about what I’m going through. I’m also thankful to the group’s founders for their tireless efforts to raise awareness of the condition.

7) One thing I definitely didn’t realise when I first got diagnosed is that I’d still have to deal with all the other difficulties of life as well as Neutropenia. There are no concessions when it comes to break-ups, bills, work stress or death. You still have to deal with them even if you’re sick. I’ve learned now that if something major is happening then everything else has to take a back seat. I get through most things with a mix of painkillers, caffeine, adrenaline and willpower. I also pray every night that life won’t throw any new negative life events at me and ask that if it does, I will find the resources to get through it.

8) Having Neutropenia has sent me to the edge of despair but it has also taught me patience, determination and tenacity. Despite the overwhelmingly negative influence it has on my life, it hasn’t stopped me doing what I want. I’ve had to adjust my expectations of how and when I can do things but as long as I don’t set goals that are too unrealistic, I can make progress.

9) Having Neutropenia has also taught me to look after myself emotionally, mentally and physically. I wasn’t very good at this before. It’s taught me to take responsibility for my diet, lifestyle and wellbeing because the consequences of not doing so can make my illness a lot worse. I’ve realised I can’t be everything to everyone anymore. Anyone who brings negativity into my life can now see themselves out via the back door. Now my life is full of good food, lots of rest and people I love to spend time with when my health allows.

10) There is a 50% chance that if I had children they would have Cyclial Neutropenia. There are many reasons why I’ve chosen not to have kids and this is high up among the reasons. I’ve struggled so much with this illness that I couldn’t inflict it on a child. Even if they were healthy, I don’t want to be a sick Mum. I could only entertain the idea of being a parent if I was able to do it to the best of my ability. I know other people with Neutropenia who have kids but it’s not the right thing for me. I’m happy with my decision but if I didn’t have this illness, there is a good chance that things could have been different.

To find out more about Rare Disease Day 2015 and hear other people’s stories of living with rare illness, head over to http://www.rarediseaseday.org

Food and Mood – how to eat well in order to manage depression and anxiety

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Food and Mood – how to eat well in order to manage depression and anxiety

The link between food and mood is well documented and scientifically proven. We all know its important to eat well, but when you suffer with mental health issues like depression and anxiety, it’s even more essential to maintain a good diet. What you do or don’t eat can have a drastic effect on how you feel and can make the difference between improving or worsening your symptoms. Mental health charity MIND report that links have been demonstrated between low levels of Omega 3 oils (found in oily fish) and depression. It’s also been shown that too much caffeine can make anxiety worse.

However, Action on Depression discovered in a survey by the Food and Mood project that of the 200 people who took part, 88% said that changing their diet contributed significantly to improving their mood or mental health.

The trouble is, when you feel down, anxious or unstable, the last thing you care about is how much oily fish you ate that week. You don’t care about eating well, or even eating at all. This isn’t a choice most of the time. It’s the most natural thing in the world to respond to how your body feels and if you over-ride it, you can end up with some unpleasant consequences. I suffered a period of extreme anxiety a few years ago which resulted in me losing 2 stones. People though that I didn’t want to eat, or that I wasn’t ‘trying’ but the reality was that I simply couldn’t swallow because my throat was clenched too tight. My body was paralysed with tension for most of the time. If I forced myself to eat, I would be sick afterwards. Interestingly, when I suffered from mild depression I ate more, but my most severe depression resulted in a nil by mouth situation. I knew that none of these responses were ideal, but it’s hard to over-ride them or even try to care when you are in the thick of it.

As I also suffer from chronic physical health conditions, I had to try and make myself care, if only to stop these illnesses getting worse and adding to the overall amount of problems I eventually needed to overcome.

Rather than putting pressure on myself to shop and then cook wonderful healthy meals when I didn’t feel like it, I decided it would be better to work on damage limitation and being realistic about what I could eat when I was severely anxious.

One thing I took advantage of was that I was more likely to eat if I was with other people. The only problem being that when you feel depressed or anxious, it is a natural impulse to isolate yourself and let your relationships slide. As I have mentioned in one of my previous posts, ‘Depression and Intuition’, I believe the best way to manage depression is to do the exact opposite of what you feel like doing. It’s not always easy to know what you need when you feel down, but I’ve found that isolating myself makes everything a million times worse. So if you feel like you want to isolate yourself, do the opposite and meet people, especially at lunch or other meal times. See if the company, stimulation and smell of food can rouse you a little. It often did with me, even when I was convinced I wouldn’t order anything.

If you are left to your own devices, try to monitor and be aware of what is going in your mouth. It can be a good idea to keep a food diary to record what you eat and see if there is any correlation with your mood. My depressed food choices centred around the sugar, fat and carbohydrate food groups. If I ate, it was usually toast, crisps, chocolate or cakes. Or anything that was lying around the house that took less than 5 seconds to open. I was definitely a ‘comfort’ eater but then the more depressed I felt, the fewer calories passed my lips. When I realised how little I was eating during anxious episodes, I knew I had to take action. The result of my poor eating habits were definitely reflected in my equally poor mental health.

The trick I found was to try and keep a steady flow of nutrients through the body, in an easy and hassle free format. Sometimes this may mean forcing yourself to eat, but it is necessary and worth it. When I started to make changes to my diet I noticed that my mood swings were less frequent, I was less irritable and my anxiety levels were a lot lower.

Instead of quick-fix snacks of chocolate, crisps and cakes, I tried quick-fix healthier options instead such as yoghurt, fruit and nuts. All of which can be opened in less than 5 seconds and do not require cooking. I also bought bags of ready chopped salad and ate them with pre-cooked mackerel fillets. I’d cut off a corner of cheese as a snack, or if I couldn’t be bothered with that I had Babybel miniature cheese, which comes in its own individual portions. I discovered you can buy cooked wholegrain rice in pouches and had this with cooked prawns and microwave vegetables. Wholegrain cereals and muesli were also easy to eat.

Soups were my main depression/anxiety go-to food choice. I would recommend the ones with ring-pulls as finding a tin opener can be just too hard when you feel bad. Soups are comforting, easy to swallow and can be relatively healthy. Some of the ‘Farmer’s market’ style tins have enough ingredients in that they could easily pass as a full meal.

All of these are a good compromise between what you would prefer to eat and what you should actually be eating.

I also found that eating small snacks throughout the day instead of full meals was more achievable and realistic.

I’ve managed to make a habit out of making healthier food choices, to the point where I now feel instantly terrible if I slip up and eat badly. It is worth making a few changes, even if it seems like a big effort.

Does anyone have any other quick and healthy food recommendations? Please share in the comments box below!

Is there anything positive about having a mental illness?

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Is there anything positive about having a mental illness?

Having a mental illness is difficult, challenging and supremely negative in many ways.  It can cause untold stress and ruin or end lives. At first glance it doesn’t seem like there is anything positive that could be gained. When you are living with the awful reality of it, every day can seem like its suffering for sufferings sake.

I can verify from my own struggles with anxiety and depression that both have been dreadful experiences. However, during recovery periods and times of wondering what the point of it all was, I realised there were positive aspects I could take from my difficulties.

The mental health journey is one I would have preferred not to take, but in travelling this road I can’t deny I’ve learned a lot about myself. I’ve questioned everything and pulled myself apart in therapy in an attempt to understand and help myself better. Its been interesting and fascinating to learn why I am the way I am.  Depression forced me to look at everything in my life that wasn’t working and to get better, I had to make changes.

My problems put me in touch with a part of myself that maybe I wouldn’t have seen had I never struggled in this way. I’ve learnt self-awareness and I’ve begun to question my thoughts, actions and beliefs. Now I know who I am and what drives me, plus I have a wealth of experience in dealing with my demons. Without mental health issues, I may never have got to know myself so well, never made positive changes and never reached the point I’m at now of feeling I’ve evolved through a thousand lifetimes.  I’ve changed and grown to the point where I feel I’m a different person entirely. I’ve certainly had value for money out of my existence on the planet, that’s for sure!

I look around and see people who have stayed pretty much the same their entire lives and  I’m glad that I can see such a process of learning and growth in my life. In spite of the circumstances which caused the illness, I would rather be like this than be someone who never scratched the surface of their existence.

Mental illness has made me search hard for purpose and meaning in life as depression is the absence of both. In order to get through it, I had to find out what the point was, for me. To survive it, I couldn’t coast along and if I ignored these feelings, my depression was made worse.  It’s made me work hard, not only to overcome my problems but to achieve things in life. I’ve found both motivation and ambition through feeling so bad.

The worse I felt, the bigger the personal changes I made to get myself out of it. Depression made me take more risks. When you have felt so bad that you don’t want to live anymore, you don’t have anything to lose. I’ve pushed myself in the direction of all my goals because the worst-case scenario was never as bad as the feelings I’d already felt.

I also think that my problems have given me a compassion and empathy for others that I may not feel so intensely had I never struggled myself. My experiences meant I forged deep connections with others who were struggling and I now have a strong desire to help people understand and work through their difficulties. Without depression and anxiety, I may never have noticed or cared about other people’s problems to the extent that I do.  I may never have found myself in a job I love, supporting young people or found that writing this blog could help me and other people too.

I’ve also learned to live in the moment and appreciate the here and now. It’s not always easy to know when depression and anxiety will strike, how long they will last or how badly they will affect me this time around. These days, if I’m feeling good, I savour and appreciate those times and try my utmost to make the most of them.

We know that the present is all we have , but I don’t think we always hold onto each moment and make a conscious effort to notice and experience it.

I’m more able to appreciate the small moments of joy and hold onto them to remember during the bad times. Having chronic health issues also has further reinforced my ability to be completely present in every well period of my life. It has given me perspective. I don’t need a lot of money, possessions a car or fancy holidays. Today, a bright sunny day and a great piece of cake are enough to bring a smile to my face.

The fact that I’m 42 and I’ve not killed myself from depression has given me confidence to deal with anything else life might throw at me. In the midst of a bad depressive episode, I find it difficult to say anything nice about myself, but now I’m well I can see that I must be strong and determined otherwise I would never have got through it. Having anxiety in particular has given me tenacity; each minute of feeling so awful is stretched out to feel like a lifetime, so I’ve had to learn how to ride it out and develop good coping skills.

To be honest, I was concerned when I started this blog that I wouldn’t find enough positive things to mention. I’m surprised that I can see so much good in such difficult circumstances. I know there isn’t always a point to what happens in life, but I’m glad I’ve found the point of what I’ve been through.

Can anyone else see positive outcomes of having a mental illness?

Dedicated to medicating.

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I’ve had different views towards taking medication over the course of my life. Interestingly, for someone who turned up at the doctor’s surgery at 17 with Depression, I wasn’t offered any sort of chemical relief until I was having a breakdown in my final year of University age 24. This corresponded with an extremely unhelpful consultation I had with a witch-like psychiatrist who I am tempted to name, even though I don’t ordinarily do that for fear of a libel suit. After a ten minute session with witch-features, I came out with a prescription for Prozac and my first sojourn into the world anti-depressants began.

I was hopeful that tablets would help me. At the very least I hoped they would enable me to get to the end of my degree and graduate with my friends.

They did, but Prozac turned me into even more of a nutter than I already was. Within 2 weeks I was having manic phases and rampant insomnia. I couldn’t relax even for a second and had to burn off my restlessness by going for dawn perambulations around the council estates of Huyton. The only good thing that came out of this phase was the sudden completion of my 10,000 word dissertation over the course of one weekend.

After a few more weeks of mental mania I decided I couldn’t cope with the new fast-forward style me and threw the Prozac in the bin. I didn’t attend any further appointments with witch-face as I didn’t trust her to prescribe anything remotely appropriate.

My second adventure in anti-depressant land happened when I was 26. I had moved house and got a different GP; under his recommendation I decided to try a course of Amitryptiline. I was gutted when the same reaction happened and I became restless, agitated and uncontrollably manic within weeks. I was now living by a park, so my restless ramblings were conducted in more picturesque surroundings, but the mental mayhem was the same. Again, these tablets were lashed in the bin.

I was starting to think that medication just wasn’t for me, but a third dalliance with Depression when I was 28 caused me to reconsider. I’d just been diagnosed with Neutropenia (rare blood disorder-see previous posts) and was finding life to be very trying and incomprehensibly shit. After being hospitalised for a week and tested for Leukaemia, HIV, Hepatitis B and C before the diagnosis of Neutropenia was arrived at, I asked to see the hospital shrink as I wasn’t sure there would be any person left to treat if my feelings escalated. I explained all about the bad reactions to Prozac and Amitryptiline and the psychiatrist listened very carefully and deduced that the other 2 practitioners clearly hadn’t listened to how bad my anxiety was. He thought giving those drugs to someone with extreme anxiety was very bad judgement and highly unprofessional. He prescribed a course of Dosulepin, an older tricyclic anti-depressant which had sedative properties.

It took about six weeks to kick in, but it proved to be a very welcome addition to my life. I found the will to carry on living and felt able to deal with all the medical drama. I stayed on it for the next eight years and five of those were the best years of my life.

I decided to come off it in my early thirties. I’d managed to get a secure full-time job and everything was just peachy. I stayed alright for a good few years but then the untimely death of my father once again knocked my brain settings out of whack. For a while I didn’t notice I had deviated so far off my axis. As the slide towards Depression was so gradual, I’d got used to feeling bad and started thinking it was normal to feel absolutely fucking terrible. By the time I arrived at my GP’s surgery a gibbering quivering shadow of my former self, I was so far gone that it took many months for the Dosulepin to re-acquaint itself with my neurotransmitters.

I am still on it to this day. I have fought with many new doctors, psychiatrists and other medical personnel to stay with Dosulepin as it’s apparently not a recommended drug any more. There are newer, ‘better’ anti-depressants on the market with less side-effects. Dosulepin worked so well for me in the past that I don’t see the point of taking the risk of changing. Especially when I have tried and failed to enjoy the company of both Prozac and Amitryptiline.

It’s difficult to question the authority of doctors, especially when you are feeling vulnerable and your head is wrecked with Depression. But doing so got me off two anti-depressants which clearly made me worse. It also helped me to find one which did actually suit me.

I have to attend a medication review every few months with my GP and they still keep suggesting I change to a newer anti-depressant. Recently I was asked to consider coming off anti-depressants altogether but I’m not doing that either. If I had my way I would stay on Dosulepin for life. It clearly fills in the blanks in my brain chemistry and I will deal with the long-term side-effects if and when they arrive.

I’m not someone who has a problem being on medication for Depression. I take injections for my Neutropenia and the principle is exactly the same. Medication isn’t the only thing that made me feel better, but it has made a massive contribution which cannot be underestimated.

“Fail to plan and you plan to fail” – coping strategies for when life turns nasty.

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One of the most reliable things about life is that you can count on it to fuck you over at some point. Whether that is through difficult life events, relationships or circumstances, it is rare to sail through to old age completely unscathed.

I’ve employed various coping mechanisms over the years to deal with depression, anxiety, long-term health problems and a variety of other difficult things that came my way. Some of them were good and some were very bad indeed. Before I received proper therapy and support and got to know myself inside out, my coping strategies included heavy drinking, over-eating, self-harm, exuberant credit fuelled shopping sprees and hanging out with people who were as fucked up as I was, or worse. I’ve always had an invisible sign on my head saying ‘Come meet me!’ that only the seriously messed up could read.

It’s taken me the best part of 25 years to rid myself of all this destruction and find more helpful and less damaging ways to cope with life and the problems I’ve faced.

I’m proud of the fact that I haven’t carried out any of the above unhelpful methods of coping for many many years. These days, I am sober and eat healthily, the credit cards have been banished and my friends are either completely normal (whatever that is) or of a pretty similar level of battiness to how I am now.

Although I am on a stable footing at the moment, I’ve learnt that I must always have coping strategies hard-wired into my brain. Staying on top of mental and physical health problems requires vigilence, discipline and self-awareness. It’s not a very relaxing life, but it’s one I feel in control of.

Perhaps the most important factor in coping is your belief system and attitude. I’ve always believed things would get better, even when they were fucking terrible. No matter how improbable it seemed, I knew that if I didn’t believe this I would be doomed. Having this belief opens you up to things which may help and improve your situation. If you don’t believe things will get better, you dismiss or don’t even notice anything good that comes your way. Running closely alongside this belief is to categorically believe there will always be SOMETHING that you can do to improve your situation, no matter how small and insignificant it may seem. After noticing I am still alive and prospering after many years of hell, it is now part of my coping hard-wiring to believe that I will get through any future shit that comes my way.

Another important coping strategy is fine-tuned self-awareness. I’ve learnt to recognise all my own signs of stress, depression and being overwhelmed. It’s been very important to me in coping with problems to recognise when I am NOT coping.

If I feel I am not coping, I have learned by trial and error that certain actions will always help. Talking about it to someone I am close with can often stop any problems dead in their tracks. Learning that some people are better than others to talk to has been a key development in my life. As was letting go of the expectation that certain people ‘should’ be there for me. I wish I’d known 20 years ago to just give up if people don’t offer their time, attention and support freely.

A branch of this coping mechanism is to never isolate myself if going through a tough time. I have a tendency to get right in my own head, over-analyse things and feel very intensely overloaded indeed when I am alone. I know that to maintain my current and future sanity I must police how much time I spend sans company. I also know now that I cope with life best when I am not living on my own. I’ve tried it 3 times, even though I vowed after the first time never to do it again. All 3 times I did it, I was completely unable to deal with what life threw at me. I think I felt I ‘should’ be able to conquer it, but it’s just not for me. It brings out my absolute worst self and you should all hit me around the head with a wet fish if you ever hear me planning to do it again. Maybe for other people, a break from the world is exactly what’s needed and living on your own suits you. The important thing is to know yourself and your needs and listen to them.

Another favourite coping strategy is acceptance coupled with being realistic. Don’t get me wrong, by acceptance I don’t mean settling back and not doing anything about your situation. I’m a firm believer in taking postive action and making changes if you can. I’m talking about accepting things that you can’t really change, like other people or a lifelong health problem. It’s taken me a long time to learn, but I’ve realised that you can waste a whole lot of energy fighting things instead of working within the boundaries of what you have been dealt. It’s about accepting when you have changed everything you possibly can and being realistic about the world, life and your situation.

There are so many other things I’ve found useful and helpful that I could carry on indefinitely. The coping mechanisms I’ve mentioned above are top of the list but there are many others such as keeping a routine, eating well, writing and having a bar of soap from Lush in the bathroom at all times.

It’s all about taking responsibility and being honest with yourself, identifying what helps and what doesn’t. What works for someone else might not work for you. I’ve been advised numerous times to do Yoga and meditation for example, but they don’t help me. I end up thinking about all kinds of bad stuff or composing shopping lists in my head when I’m meant to be focusing on my breathing. I can’t switch off this way and find it more relaxing to put funky music on and have a dance. Work out your own way of coping and pull on your resources when times get tough. You can’t stop shit happening but you don’t have to be at the mercy of how you feel.

Why are we all so fucked up?

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Mental health is a BIG issue. The stats are that 1 in 4 of us will experience some kind of mental health problem in our lifetime. These figures can only have been measured in terms of who has presented themselves and owned up to it. I’m convinced there must be millions, or even billions of people around the world who haven’t told anyone and tried to deal with it themselves, which makes the stats even higher. In the UK, waiting lists for therapy and other treatments are outrageously long because so many people require them. Mental health problems cross all the barriers of age, race, gender, occupation, social class and status. No-one is immune.

When you consider how much of a problem this is, it seems both ridiculous and amazing that as a society, we don’t put much emphasis on preventative measures. Sure, there is a lot of talk about improving services and developing new treatments along with many extremely worthwhile campaigns designed to get us talking and end the stigma. These are all fantastic developments. But they could be seen as locking the stable door after the horse has bolted.

In order to truly address the scale of the situation, we need to look at WHY so many people are struggling.

It’s complicated to break down because there are a lot of different factors to take into account. You could say it’s because of someone’s upbringing, a crisis that happened or that mental health conditions are attributed to genetic factors. These are certainly true in a lot of cases, but I think much of it is down to the fact we do not place enough importance on emotional wellbeing in our society.

By this I mean there is no education or preparation designed to equip us for the basics of surviving life and developing skills to deal with anything life might throw at us. For instance life can hurl relationship difficulties, communication breakdown, self-esteem problems, family issues, raising children, divorce, illness and death at us. That’s just the tip of the iceberg from my cultural perspective. Put yourself somewhere in the world that is experiencing war, extreme poverty or oppression and try to come out of that in one piece. You may suffer adversity or difficult circumstances and cope with it, but what if you can’t? The evidence is that many people simply can’t deal with the hand they have been dealt in life. We don’t know how to talk about and deal with our own problems and it can also be difficult to know how to help someone else.

Life is hard. It has never pretended to be anything else and it has no obligation to be good to us. But why don’t we know earlier about the way that life can suck and have a better idea how to deal with it?

I think a lot of the problems people develop are normal responses to difficult or abnormal circumstances, but we just don’t know how to deal with these responses and feelings.

I think it is shocking that we are allowed to leave school without an obligatory life management skills qualification. I don’t think it’s enough to say that this is a job for parents, or for the person themselves to find out through ‘life experience’. I think we should be taught how we can look after ourselves emotionally, recognise the signs of not coping and have a toolbox of resources both internal and external to draw on should we feel unwell.

It should be commonplace to implement mental health training and awareness for students in the curriculum but also have sessions focused on positive and proactive ways to deal with life problems.

Basic counselling skills would not go amiss either. How much easier would life be if we were all trained in listening properly, helping somebody to reflect on their situation, adopting a non-judgemental approach to another person and assisting them to find their way through their emotions? I gained a basic counselling skills certificate in 6 weeks, so surely it wouldn’t take much to have this as a module in a personal skills/health subject for older teenagers?

It needs to be normal for children to grow up feeling valued, heard and equipped with life coping skills. To have a realistic sense of the world they are going into and to feel confident in their abilities to handle emotions and situations. Particularly because mental health issues, specifically anorexia and bulimia are now presenting themselves in children under 10.

Education focuses on grades and preparation for University or jobs. It doesn’t focus on the whole person or look at what might be stopping them from achieving. A student may be extremely academically capable, but be unable to attain their potential if they are struggling emotionally and mentally. They are sent to Learning Mentors, counsellors or behavioural therapists if they are in trouble. Why not eqip them early on with the skills to express themselves and work through issues directly in the syllabus?

It needs a significant shift in perspective which I don’t think will happen unless we take the emphasis off fixing the problem and look instead at the root causes. Education is only one route into addressing mental health difficulties, but it’s a start.

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.