Pride Comes Before a Fall But Who Cares!

They say that pride comes before a fall but I think there are times where that is quite simply nonsense. My feeling is that at times a sense of pride in your achievements helps to motivate you and push you to keep going.

We normally feel proud when: at work – you negotiated successfully a huge contract; fitness – you completed a 10 km run despite three months ago having never run at all; home – you helped to design your new kitchen and now it is in place and looks great.

For those who suffer from a chronic illness, the things that we can feel proud of significantly narrow. Physically achievements that ‘normal’ people regard as successes are impossible; anything that requires a financial commitment tend to be impossible; work achievements in the ‘normal’ sense again are impossible – just surviving work or working at all are the greatest achievement most can hope for.

Despite this narrowing of a sense of achievement, there are lots for M.E. patients to feel proud of. Rather than macro achievements however ours are very much micro achievements. We achieve things that ‘normal’ people wouldn’t even notice on a daily basis but for us represent mountains to climb.

Today, I feel a great sense of pride in my achievements. The progress I have seen over the last 7 weeks and in particular in the last 3 is quite frankly remarkable. The progress came in terms of my physical management but also my psychological management of this disease. The combination has enabled me for the first time in a long time to feel genuinely stronger and more ‘normal’.

So what have I achieved?
1. I am now able to stretch all the muscles in my body without payback later.
2. I have been able to increase the duration of each stretch from 5 seconds to 7 seconds.
3. I have created a successful system of alternating ‘Active’ and ‘Rest’ days, this has enabled me to avoid boom and bust.
4. I have been able to work out the baseline number of steps per day I should take – again avoiding the confusion between perception and reality of how active I am.
5. I have increased my Rest day steps from 1700 to 2530.
6. I have increased my Active day steps from 2700 to 3630.
7. I have enabled myself to go from practically housebound when alone, to being able to go out 3 – 4 days a week alone.
8. I have increased the distance I can walk on my Active days from practically nothing to 0.9 of a mile with a 10 – 20 minute break in the middle.
9. I have worked out that I can increase 2 activities a week by 10% without payback.
10. I have increased my Activity Points from an inconsistent 11 to a consistent 13.
11. I have been able to control my urge (most of the time) to do more than should on a good day therefore making it less likely that I will experience boom and bust.
12. I am able to read a book again (in short bursts) having not been able to for about 6 months.
13. Over the last 21 days, 20 have seen only mild symptoms where previously they were either moderate or severe.
14. I sleep every night for 8 – 10 hours: up from 3 – 4 hours six months ago.
15. I didn’t give up when all signs suggested I should.

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If you have never been chronically ill, then my improvement (understandably to you) will be barely worth mentioning. If you have been chronically ill, you will realise the enormity of these achievements.

I feel incredibly proud of myself for not giving up, for being determined to very slowly improve my health and my activity level.

I am particularly proud of the fact that I didn’t give up fighting for suitable medical support and any necessary medication until I got it. Most of my achievements (except for those from medication) have been a result of my own self-designed treatment system but without those in the medical profession confirming that I was doing it right and by re-iterating just how slowly progress would be made, I may have given up – thinking my system wasn’t working. Therefore while my fight for medical support may not have led to anything revolutionary, it gave me the necessary confidence to keep going.

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I remember as a child painting pictures (despite not being in anyway artistic), I remember how the more I concentrated on the tiny details, the more enjoyment I got from the activity and the finished product. Perhaps being chronically ill has reminded me to enjoy the little things about life that make life good and not worry so much about the big picture.

Modern life encourages us to want to achieve big – we need to run the marathon; earn big money; buy a big house; and have perfect children who are skilled in music, sport and are academically brilliant. Perhaps we shouldn’t be worrying about those things so much and concern ourselves instead with ensuring that every day we get as many of the little things that make life good right. So say hello to your neighbours, chat to your partner over dinner, be kind to strangers, take time to just be yourself by yourself, do your best at work without thinking that means you must work long hours, be happy with what you’ve got, go for a walk and notice the little insects and the flowers of spring. Surely these things will ultimately make you happier, stronger and prouder than being super fit and rich.

See also my other non-M.E. related blog: Me Opinionated! Really?

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What Drives You?

78 days ago I started my very first ever blog, stating that 132 days earlier I had come down with a horrid cold that lead to M.E. It is now 210 days since all of this began. This will be my first month where I will not receive a full salary and I am very aware of the long road ahead. Radio 4’s Libby Purves this morning asked her guests, “what drives them?” This made me reflect on my own situation and ask the question, “what drives me? In the face of so many difficulties and so many opportunities to give up a sense of positivity and a determination to get better, what drives me to not give up?”

If I am honest, I don’t really know. I’ve never liked to be the sort of person that doesn’t do well in whatever I do. I’m also highly competitive and the idea of failing to achieve something I’ve set out to do seems very unacceptable. I am driven by a determination to get better. I don’t know when I will get better or whether in reality I will ever be truly ‘better’ but I have an internal determination to not give up.

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When I first became ill (post the cold) my doctor and I thought it would only be short-term. Then it was easy to be positive – I was not going to be sick for long and when I got better, life would thoroughly return to normal. It became clear after the first month or so that this would not be the case. I was not making progress, if anything, I was going backwards.

The challenge in those early months was the determination to learn as much as I could about this illness, educate myself to the point where I could begin to direct my own treatment, begin to take control of what was happening to me and what I needed to do to make progress.

Don’t get me wrong, there were long days and weeks where making progress or feeling hope was incredibly difficult. It seemed at times that my health was only going in one direction – down hill. I felt that it was inevitable that I would join the ranks of those where were severely ill with M.E. – housebound and more likely than not bed-bound.

Despite this sense, I still somehow managed to retain the drive to stay hopeful and try and do something about my situation. It was, however, only when I thoroughly accepted that I was seriously chronically ill that my health began to improve. For me it was the acceptance that I was very ill that made each aspect of my treatment (pacing, meditation, medication, exercise) take on a new very important role. To fail to stick rigidly (as much as one can when you have M.E.) to my treatment plan was to quite simply postpone the point when my health returned to something resembling normality. If missing a tablet would be consider medically foolish, then surely continuing to walk when I began to tire was no different.

Over the last few months, I have had a dawning realisation that this illness has given me an opportunity. I can’t exactly describe what this opportunity is, it has yet to become clear. I can’t help however feeling that my life will change utterly when I am ‘better’. I have always firmly believed in the old saying – every cloud has a silver lining. I am excited now to discover what this opportunity may be and this is helping to drive me not to give up, to stay strong and determined.

Now I also have the additional knowledge that I can reduce the impact of my illness on my life. I have had several weeks of feeling ‘well’ (at least in relative terms). So now when I have a bad day or a bad week, I know it is in me to feel better again. I have the means to do it. It helps retain a sense of hopefulness and further reinforces my sense of determination that I will get ‘better’ and I won’t give up.

I am certain that 365 days of being ill will come and I will not be ‘better’. I know that the road in front of me is incredibly long. I know I will have dark days. I will have days where I know I have done too much and will kick myself for not having stopped earlier. More importantly, I know that I will retain my drive to keep progressing and I will not give up.

See also my other non-M.E. blog – Me Opinionated! Really?

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M.E. Awareness Day

Today is M.E. Awareness Day. Today is the today when M.E. patients all over the world from their beds or chairs try and spread the word about the existence of this disease. In Northern Ireland an M.E. support group has managed to get several public buildings turned blue (the colour associated with M.E.) and last year they managed to get M.E. trending on Twitter – something that they are attempting again as we speak.

If you are a regular reader of my blog, then you should by now understand what M.E. is and how it effects a patient. If you are a new reader, I recommend you have a read of some older blogs.

Today I don’t want to go over old ground and explain in detail the impact a chronic debilitating auto-immune disease has on your health. Let’s just leave it at the fact that it impacts on every aspect of a sufferer’s life causing extreme fatigue, pain and brain fog.

Today I want to celebrate patients. There are few diseases out there so misunderstood and so poorly supported by the medical profession. M.E. patients therefore should be celebrated for their ability to keep on fighting for proper medical support in the face of a society and a medical profession that often abandons them to their fate.

They should be celebrated for waking up each morning and retaining the determination to get out of bed and get dressed despite their pain and exhaustion.

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They should be celebrated for retaining hope that they can have a positive future despite a seeming inability to even begin the process of changing anything.

They should be celebrated for supporting strangers from all over the world experiencing the same illness for this enables people to feel less alone. This enables people to keep up the fight despite the odds being against them.

They should be celebrated for allowing their experiences lead them into new careers as writers, doctors, M.E. experts, forum moderators plus many more careers. They should be celebrated for choosing a career within which they can spread the word on M.E. or provide suitable medical support for those who are still ill.

They should be celebrated for retaining a sense of humour about their illness when the other option is to cry.

They should be celebrated for crying in despair when their other option is to keep it all in as a dark shadow over their lives.

They should be celebrated for training themselves to become M.E. experts when faced with doubting Thomas’s in the medical profession. They should be celebrated for the fact that they know more about their own illness than 90% of the medical profession.

They should be celebrated for seeing their illness as an opportunity to change their lives and that of their families for the good despite all signs suggesting otherwise.

M.E. patients could be considered victims of this disease. There are definitely days, weeks and months where feeling like a victim is the reality of how we feel. There are always dark days where being a strong fighter seems an impossibility. There are days where hiding in bed pretending nothing is wrong is the greater force in your life.

M.E. patients are not victims however. They are strong willed, determined, caring, loving fighters. They prove themselves day after day to be worth fighting for. They represent a wealth of intelligence and good character just waiting to re-enter the ‘world’ and be a force for good.

So on M.E. Awareness day just take a moment to recognise that these people exist. Take a moment to recognise the incredible job they do each day by simply getting through the day.

Add a blue M.E. ribbon to your Facebook or Twitter photo, share this blog, comment or simply recognise the amazing group of people out there in your thoughts.

Add a blue ribbon to your Facebook or Twitter account

See also my new blog: Me Opinionated! Really?

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A Meditation on Meditating

For M.E. patients there are a thousand treatments for every thousand medical practitioners or patients they talk to. Trying to work out what you should and shouldn’t do can be near to impossible. There seems to be only two things everyone agrees on: you need to pace and you need to meditate.

For me the pacing thing is relatively easy although I’m not saying I never mess up (remember Easter Sunday). Pacing is logical however. It is almost mathematical. X amount of energy to be split between Y and Z activities. Where X is smaller than Y and Z – you’ve messed up!

Meditating is altogether different. It requires the suspension of logic, the suspension of thought. It also requires one to get over the fact that it has a can have a somewhat fruit loop reputation. It is often associated with Eastern mystics and the search to find oneself. I had only come across meditation in the five minutes at the end of yoga lessons. By the end of a lesson I was so exhausted anyhow that sitting there with my eyes closed was no hard task.

Meditation, as I am discovering, is a highly complex practice with many forms and many benefits. I, however, have been encouraged to practice two main forms. Firstly where I concentrate on relaxing specific parts of my body, one at a time, using intercostal diaphragmatic breathing to imagine breathing a heaviness into my limbs, enabling each muscle to relax.

The second method is often called visualisation: you imagine yourself somewhere relaxing – perhaps in a hammock on a beach with the sun shining on you and waves lapping. Alternatively you may imagine somewhere that you find relaxing; I personally choose an island in the archipelago near Stockholm where we holidayed last year. Sometimes you focus on just the tiniest of detail and imagine all your senses experiencing it. The one thing we are advised not to do, which you regularly find in meditation, is clenching up all your muscles then one by one releasing them. This is a great way to relax your muscles but is a big no-no for M.E. patients.

Meditating is so encouraged by medical practitioners because of it’s detox value. M.E. patients, as I have stated in previous blogs, have a bigger build up of lactic acid and other chemicals in their muscles than most people. They believe these chemicals are the reason why patients experience such high pain levels. Pain levels of course compound our difficulties in sleeping, lack of sleep compounds our difficulties with dealing with pain, poor sleep and pain reduces our ability to function during the day etc etc. Meditation allows the muscles to totally relax thereby reducing chemical build up and therefore reducing overall pain.

It also teaches the body and most importantly the mind to be still. The demands on your life as a sick person can be high. For me the biggest demands are the those that I set for myself. Demands unfilled or unfillable can lead to a sense of guilt, stress or worry. All three can only do one thing for an M.E. patient – make them categorically worse. Regularly providing your mind with opportunities to relax and empty it of worries helps to put your concerns in prospective thereby encouraging you to feel less guilt or worry in general.

My mind is never still. I have never been able to do one thing at a time. My mind flits from one project to another, from one idea to another. I can’t just sit and do nothing, I need to be doing something with my hands and my brain. My brain is rarely totally still. Training my brain to be still is therefore crucial to developing pure rest and relaxation. Total Rest for M.E. patients is not sitting in front of the TV or reading a book – this is known as Active Rest. While Active Rest is important and most of my day is spent doing it, it does not have as much restorative value. Total Rest is sitting or better again lying and doing absolutely nothing and that includes your brain. The only way for me to achieve this is through meditation.

My problem then comes in several ways: I feel really silly lying there deeply breathing in and out and trying to imagine myself on a Caribbean beach while I’m actually in wet England in the pouring rain; and secondly I find it boring! Yes I’m sure if I find it boring, I’m not doing it right. There are days where it is easy and the time passes in a flash but there are days where it just doesn’t work, I can’t relax into it! This therefore makes regular practice essential. I must train my brain to relax and just give myself up to relaxation.

In my head this is no different than training to run a marathon. You wouldn’t expect someone to run one if they had never run in their life. You would slowly build up to longer and longer runs. You would explain to them that they will have days where the shortest run is the most painful experience they can imagine and days where longer runs just fly by. Overall though if they practice consistently, you would expect them to eventually be able to run the marathon. Meditation practice it appears is no different.

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Practicalities

1. Find yourself a CD or mobile phone app that you can listen to during your meditation. Try and find apps with at least a 20 minute meditation. Have a selection so that you don’t learn the meditation off by heart therefore being able to predict what comes next – if you do this your brain is not switched off! I use the following mobile phone apps:
– Simply Being
– Relax Lite
– Meditation, Power of Mind
– Sleep Easily
– Headspace (only ten minutes)
2. Find yourself a quiet place to sit or lie where you won’t be disturbed.
3. Turn on airplane mode or don’t disturb on your mobile phone and take the phone off the hook
4. Make sure you are warm, your body temperature drops during meditation so grab yourself a blanket.
5. Make sure your spine is straight and your head is supported.
6. Ideally don’t lie on your bed. Your bed is for sleeping and the aim is not to fall asleep (at least not every time!)
7. Give yourself up to the meditation. Try not to let your thoughts of feeling silly or bored stop you. Persevere even when you can’t be bothered.
8. Don’t worry about not having a totally empty brain, just try not to follow any trains of thought. Each time your brain wanders off, bring it back to the meditation by concentrating on your breathing or whatever task you are being directed to do.
9. Try and keep to a strict time when you will meditate. The routine helps your body to heal apparently.

How often?

The advice I received from an M.E. expert was to meditate three times a day for 20-30 minutes at a time. I was also encouraged to meditate to help me fall asleep at night if I was struggling to.

I initially received advice from a non-M.E. expert but a medical practitioner to meditate three times a day but for only 10 minutes. I therefore started off my practice using the Headspace app. I found this really useful and easy to complete. I suggest if you struggle to do the full 20-30 minutes initially to do 10 minutes at a time for a week or so until you train your brain to cooperate!

I meditate at 11 and 3.30 everyday, I should do it again at 6.30 but this very rarely happens. By then my husband is home and I’d rather spend time with him. The advice I’ve received is to not beat yourself up over it. Try and stick to a routine, it won’t work everyday but it doesn’t matter. If I’m finding the third meditation normally impossible then so be it. If I get half way through a meditation and really can’t get my head in the right place then it is okay to stop. Remember the aim is total relaxation so stressing about whether you are doing it right defeats it’s whole purpose. I was also told, should I fall asleep after my afternoon meditation it wasn’t a problem! I shouldn’t sleep for more than 60 minutes however.

As one who normally struggles to sit still and do nothing, I’m finding that it is getting easier and easier to meditate. I found myself sat by the river yesterday for twenty minutes, completely still just watching the world go by. I was listening to music at the time but my brain wasn’t focussing on it. In other words by practicing meditation regularly it seems I’ve begun to train my body to be still at other times. My body therefore is having more opportunities of near Total Rest and therefore more opportunities to simply heal.

Of course I am no meditation expert and I’m not a medical practitioner so my advice is purely from my own experience.

Check out my other blog – Me Opinionated! Really?. This is a non ME related blog I have just started.

Me Opininated! Really?

A few days ago my boss suggested that a constant focus on having M.E. may be detrimental to my recovery. At the time I disagreed with her. I didn’t feel like it was a constant focus. I only wrote every few days and I tried to be as positive as possible.

I still think I’m right however I do feel that perhaps by only writing about being ill, I was allowing my illness define my public persona.

I have decided therefore to give writing a non-M.E. blog a go. I will continue to write this blog but I have also set up Me Opinionated! Really?