Tag Archives: self-help

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!

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“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.

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?

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!!