Five Stages of Grief

I recently completed a CBT (Cognitive Behavioural Therapy) course at the RNHRD (Royal National Hospital for Rheumatic Diseases) with the aim of find better ways of dealing with my emotions. Which I know I have a tendency to squash. I’ve found it extremely helpful, but now that I’ve come out the other end and have stopped trying to bury my feelings I have to deal with them instead. Something which is not at all easy.

The Kübler-Ross model or Five Stages of Grief suggests that when we grieve we go through five distinct stages. These are Denial, Anger, Bargaining, Depression and Acceptance. We experience these when we grieve for anything or anyone. Whether that is the loss of a friend or the loss of our life or just the loss of our life as it was.

Denial is the phase where you say ‘I’m fine’, and refuse to admit there is anything wrong. I think for me the denial phase was short lived.

Anger is when we ask ‘Why me?’ and start placing blame. I’m not too good at dealing with anger, of all the emotions, I find it the most difficult and I hid a lot of my anger in my mind in places where I didn’t have to see it.

Bargaining is where we try and change things: ‘I’ll do anything to change this’, personally I go through bargaining stages quite frequently, but they are usually short lived because I know the futility of it.

 
Depression is when we retreat into sadness. When people cry and grieve. In some ways I think this is the most important part of the process. This is the stage that you must participate in fully to move on to acceptance. The very fact that there are feelings of sadness shows the start of acceptance, the true realisation of loss. You wouldn’t stop someone grieving for the loss of some they love, and it is just as important not the stop yourself from grieving for the loss of your old life.

Finally there is Acceptance. The point where you are ok with it, whatever it is.

With CFS/ME there is a great sense of loss, or there was for me, particularly in the early stages. I felt very much that I was grieving for my old life which had disappeared or ended suddenly. I went through all the stages, some quicker than others, and reached a level of acceptance. What I did not fully understand is that this model is not linear; you can revert to earlier stages. It is only through CBT sessions that I have accepted that I am allowed to go backwards. And in fact, that I have lost the acceptance I had.

 
The part of my brain that wasn’t accepting my illness I’d buried carefully as dealing with it was too inconvenient. Now, having let it out I am now experiencing feelings of anger and depression again. Feelings that I have to allow myself if I am ever to move on to the acceptance phase again.

 
The sense of loss is not as immediate as it once was, time has softened it to something less sharp and painful, something blunter and duller, but it is still there nonetheless. I grieve for the loss of my independence, my career, my life as it was. I am angry with my body for letting me down. At the moment I cannot accept that I might never get my life back. Which is strange because I have accepted this in the past and been content with that, although I now wonder if this was a true acceptance.

 
I am at long last allowing myself to really grieve for what I have lost. Not forcing myself into acceptance and burying the parts of my mind that didn’t agree. I hope that true acceptance isn’t far away.

Fighting the benefits system

If you haven’t already to signed the ATOS petition please do so and spread the word. It needs 100,000 signatures by August and there is a long way to go.

ATOS currently do the medical assessments for Employment and Support allowance, ESA, (previously incapacity benefit) and Disability living allowance, DLA. I cannot begin to describe the amount of frustration my family and I had when trying to get me some monetary support. Currently 40% of the people who turned down get it on appeal, which implies there is something seriously wrong with the system. Why aren’t the 40% getting it first time round? It is a waste of public money that these cases have to go through the appeals process. Not to mention the stress caused to people who are extremely unwell. The figures quoted by the press as for the number of people fraudulently getting support are complete rubbish, the department of work and pension’s, DWPs, figures are considerably lower. The figures for fraud across all benefits including incapacity benefit, but not DLA were estimated at 0.8% of total expenditure. The figures quoted in the press include the errors in expenditure, much of which is the fault of the DWP. There have also been some vastly inflated errors not backed up by statistics. More figures can be seen here and here. To be honest, after the experience I’ve been through it would be pretty hard to get ESA and/or DLA fraudulently, it’s hard enough to get it when you qualify for it. Not to mention you would need to fool your GP or have them complicit in your scheme to get the medical certificates. Anyway, my story about it is below. If you would rather not read it then the link for the petition it at the bottom.

I applied for DLA with the help of the citizens’ advice bureau (CAB) in the summer of 2010. We didn’t apply for ESA because I didn’t have enough National Insurance, NI, contributions to qualify as I have been a perpetual student. When I didn’t get it I assumed it was because I didn’t qualify. It was only when I started going to the local ME/CFS service that I realised I did qualify and they pretty much just automatically turn you down. I also discovered that I might be able to get NI credits even if I couldn’t get ESA, so I applied for ESA with this in mind. I did the application myself, which in hindsight was foolish, and I was called for a medical assessment. It was only a very long time later that I discovered you can actually say you aren’t well enough to attend a medical assessment and ask that they visit you at home with a chaperone present – which is what I should have asked for. Anyway I went to the medical assessment, tired and anxious as I had to get up early and my husband took me as I was unable to drive. Looking back now I am horrified they didn’t grant me the NI credits from this assessment as I wobbled around very slowly, and I must have looked terrible. But I had washed my hair the previous day and I was clean and wearing clean clothes and apparently that counted against me. I wonder how things would have turned out if I turned up unwashed and smelly. The assessment was done by a nurse, who seemed lovely, but I don’t believe she knew anything about CFS/ME. And hindsight was to prove that thought to be correct. I was asked to do various bending and standing exercises, which I did, because I was asked to. In hindsight I should have refused as they exhausted me. I was also given a mental exercise, counting down in 7’s from 100.  I was horrified to discover I couldn’t do it. For me, a pharmacy graduate to not be able to count down in 7s was frightening. I know a lot of people would find this exercise difficult, but compared to the pharmacy calculations I had been performing only a year before.... it should have been a piece of cake. It was at this point I realised how much my mind had deteriorated and I burst into tears. My husband took me home and it took me several days to recover from the ordeal.

The result of this assessment was that I didn’t qualify for ESA. In fact if I remember correctly, they said the assessment concluded there was nothing wrong with me. I was very upset and my family I suspect were very angry. We should have asked for the report of the assessment at this point, but we didn’t know that it was possible.

My mother got on the case, and it was through her support and persistence that the rest of the process was accomplished. She wrote and contested the decision and as a result I got my NI credits. Not that they wrote and told us, oh no, they wrote a letter saying I wouldn’t be required to attend ‘back to work’ interviews, and when my mother phoned them it turned out that as I was considered too unwell to be working I would get NI credits and not be required to do anything else other than provide medical certificates.

We then started the process to apply for DLA. This time my mother did the form for me and had help from the CAB and consulted a lot of books. I would have had no chance without her help, the form is very long and it requires a lot of thought, I could not have done it on my own. For anyone out there who needs to do it, get help from the CAB, they will help you for free. I qualified for the lowest level of DLA under their criteria. The application was turned down, we contested it, and it was turned down again.

At this point we applied for all the documents relating to my case. These documents proved most interesting. Not only were all my documents included, but the documents for another case for another person. Confidential information about another individual was mixed in with my papers. Something no one other than this person and the people involved in his case should have seen. An unbelievably shocking error, we contacted the person who was looking after the case on behalf of the individual in question so that they could make a complaint. I cannot rightly remember if this was the fault of the DWP of Jobcentre plus, but it along with other things, such as the lack of a letter about qualifying for NI credits, indicate serious problems and disorganisation within the system.

It was from my documents that we discovered what had really gone on in my ATOS medical assessment for ESA. The conclusion had been that I had mild depression, and would be back at work in no more than three months. I am still not working more than 18 months later. I have had depression many years ago and it lasted four years, I know what it feels like and I know that I did not have it and have not had it since I developed CFS/ME. It is an entirely different illness that appears similar as it has similar symptoms but inside my head and my body the two illnesses are poles apart. Please understand that I am not dismissing the seriousness of depression, I know it is a hugely debilitating illness, but it is not CFS/ME, and the physical disability caused by mild depression does not come close to the disability caused by mild ME, and certainly not moderate to severe ME, which is what I had at the time. Plus most depression is treatable, CFS/ME is not. To our horror and disgust this medical assessment was the grounds for refusing me DLA, despite the fact we had overturned the decision. Further letters got us nowhere, the assessment said no, so the answer was no. We appealed.

By the time we got our appeal date nine months had passed since my original application and I was on the verge of no longer qualifying for DLA. We discussed for a long time whether I would go or not. We knew I was unlikely to get DLA going forward but I might get it backdated to the original application date. Which would have given me the princely sum of approximately £500. A sum that wouldn’t even cover one month of the mortgage. We decided that the stress of going to the appeal wasn’t worth £500 and dropped the case. Part of me wanted to go for the principal of the whole thing, but I don’t really have the energy to spare on principles these days.

So as you can see I don’t believe ATOS should be doing the medical assessments. I would really appreciate it if you could add your name to this petition, and spread the word. 100,000 signatures are needed to get this off the ground, and they are needed by August. I cannot stress enough how detrimental ATOS was to my applications for benefits. And the huge number of other people who have been through the same and worse. People, who are unwell and struggling, not just people with ME, but all kinds of medical conditions. I can survive without any monetary support; it just would have helped a lot. But some people don’t have the financial support I have and really need these benefits to survive. People who have worked hard all their lives, paid their NI for years, and the government won’t help them out. Frankly it’s disgusting and it makes me sick just thinking about it.

Please sign the petition here.

Rome wasn't built in a day: Learning to be patient

I sometimes wonder if God gave me CFS/ME to teach me to be patient. I don’t want to get into a philosophical discussion about fate and God, I want to talk about learning to be patient, but I really do wonder about this occasionally. It would be nice to think getting CFS/ME had some sort of purpose.

I am not a patient person. I think I may once have had more patience, but somewhere over the years I lost it all. I can be very patient with other people, especially if I think they need my time and help. But in other circumstances not so much. Slow drivers in particular wind me up. I still behave and drive well, but inside I seethe with impatience if forced to follow someone doing 40 in a 60mph zone. With myself I have no patience at all. In the past if I was ill I would be out the door doing things as soon as I felt a tiny bit better, and then exhausting myself, from trying to do too much too soon. This is somewhat ironic given my current situation.

CFS/ME has to be the greatest teacher of patience I have come across. Recovery is imperceptibly slow. Months go by with no noticeable improvement. It’s only looking back over six months or a year that it is possible to see positive change. Not only that, but you must limit the things you want and need to do. You may really want to go shopping, but today you cleaned the bathroom, so shopping must wait until tomorrow. You may have done too much and overspent on your energy budget and you want to go out for a meal. But that must wait for a few days until you recover the energy to enjoy it and not use more energy than you have. In some ways this is easy, the planning side of me can say ‘Well, today you are doing such and such, so tomorrow is rest day, then the day after you can do...’ and so on. But actually sitting there in the moment, wanting to do something, but knowing it would be foolish is very difficult. For spontaneous people it must be horrible. You can no longer say ‘Let's go out today,’ instead you say ‘Let's go out tomorrow, if I’m feeling better’.

Time passes and you feel you have little to show for it. As much as you rage at the delay nothing changes it. If you give in to impatience and do it now, you will just pay the price tomorrow. If you wait and do it tomorrow when you have more energy, the following day there will hopefully be no price to pay. And if you rage away angrily to yourself, impatient to be up and out and doing, then you are wasting your precious energy. All those angry and frustrated thoughts cost. To the average person they probably don’t cost much, but when you have CFS/ME all your thoughts and emotions cost you energy, that you can’t afford to waste. 

So the answer is to be patient, to learn to not rage and fight your constraints, but to calmly accept that whatever it is must wait. I am learning... slowly. It is not an easy thing learning to be patient. 

‘We could never learn to be brave and patient, if there were only joy in the world.’ - Helen Keller

Feel the Fear and Do it Anyway

The problem with pacing is it requires living a very regimented life within the bounds of what you are able to do without being exhausted. When your tolerance limits are pretty low this cuts out an awful lot of things that make life enjoyable. You can plan and organise and conserve energy ‘til the cows come home, but some things are just going to take more energy than you have available. At this point you have a choice. You can either, not do it and stick to your pacing, or you can do it and pay the price. You can miss out on exciting and important events and doing things that you love, or you can do them and suffer for it

My sister is getting married this summer. I am so pleased and excited for her, as personally I love being married. And I know she and her fiancé will be very happy. She asked me to be a bridesmaid for her, as she was for me. I didn’t hesitate at all in saying ‘yes’, which I think surprised her slightly. We all know the day is going to be ‘too much’ for me, unless I make a miraculous recovery in the next few months, and I think some members of my family are very concerned about this. Whilst I appreciate their concern and I am grateful for their desire to make things easier for me, I am not concerned in the slightest. I know it will be ‘too much’, but given the choice of not fully participating and maybe being ok, or participating fully and suffering I would rather give it my all and pay for it.

I’ve called this post ‘Feel the fear and do it anyway’, but for me there is no fear, there was earlier in my illness, but not now. I know what the price is and I am willing to pay it. I think other people may be frightened or worried on my behalf sometimes, but as I told someone recently, ‘It’s my choice, don’t worry. If I wasn’t prepared to accept the consequences I wouldn’t be doing it.’ I enjoy and make the most of these events in my life whilst not dwelling on the consequences. I suppose I have learned to ‘live in the moment’.

Obviously I cannot adopt this attitude all the time. Ninety to ninety-five percent of the time I live carefully and pace myself, living within the boundaries my illness has given me. I believe that is the only way I can hope to recover. Fortunately I am now healthy enough that I can do quite a few enjoyable and life affirming things within these boundaries. But sometimes there are things that are too important to miss, and I accept the price for these things with no regret or misgiving. I accept what I cannot change. I believe you cannot go through life avoiding the things which make it worth living.

 ‘Regret for the things we did can be tempered by time; it is regret for the things we did not do that is inconsolable.’ - Sidney J. Harris

To Pace, or not to Pace? that is the Question

Very early on in my illness I was advised to ‘pace’ myself. Which very simply means: don’t do more than you can cope with. Pacing is one of the main pieces of advice given to CFS/ME sufferers, but whilst it sounds simple it is actually quite difficult to do. I think most of us like to finish a task before we sit down with a cup of tea. However when pacing, you must sit down and rest before finishing the task and then go back to it.

In the first few months of my illness I did an experiment to see what happened if I continuously pushed myself to do things. I tried pushing through the tiredness and the pain. I pushed myself for a week. After which I could take it no more and collapsed into bed, so far beyond the point of exhaustion I didn’t know what to do with myself. But I knew that fighting it was not going to help me. I had tested it – and it hadn’t worked, in fact it set me back a long way, and I was in bed for some time.  For me it was quite easy to decide that pushing myself was not an option, but putting it into practice is not so easy. I know many people with CFS/ME live their lives by pushing themselves to their limit, before collapsing with exhaustion, recovering and then doing it all again.

I am convinced (although I have no real evidence) that continuously overdoing it is detrimental to me and would delay my (hopefully) eventual recovery. So with this thought in mind I set about trying to pace myself. I had fairly mixed success to begin with. It requires a real change of attitude to leave tasks half done and come back to them later, and I can see why people struggle with it. My real breakthrough came when I went to some sessions for CFS/ME sufferers at the Royal National Hospital for Rheumatic Diseases (RHNRD). They gave me some fantastic practical strategies I could use to control and monitor my activity. They suggested an activity log that you coloured in differently for high energy activities, low energy activities, rest and sleep. Each person decided what was high or low level for them. Rest meant not actively doing things like browsing the internet or watching TV, but maybe sitting quietly with a cup of tea or listening to music. Everyone had to work out what was a suitable amount of high level activity per day for them. This was half of what they could do on a good day. The aim is to intersperse high and low level activities with rest throughout the day. You can see one of my better pacing weeks below. Ideally some of the blocks of yellow should have been broken up a bit more.

The CFS/ME service at the RNHRD have very kindly allowed me to include a blank copy of the activity log below if anyone wishes to use this to help with pacing. Or contact me through the comments section or facebook page and I can email you a copy.  There is also a copy available here with some more information.

Having established a baseline for high energy activity you can monitor how much high energy activity you do each day. And then you can gradually build up. So say you can do four hours a day (in a sensible and paced way with rests in between) after two weeks of doing this without any adverse effects you try adding on 10 or 15 minutes, if it’s ok you do another two weeks and then add on a bit more. And you just keep doing this. If you have a setback, you get a cold or something stressful happens, just reduce the baseline to a level that is ok and start gradually building up again. 

I have to admit that as my energy levels improved I’ve relied less and less on the activity log. But when my baseline was only two hours it was very useful. It also helped me develop a feel for what levels of activity were ok and what was too much. 

Action for ME have more information on Pacing here.

We All Need Our Beauty Sleep

One of the ironic things about CFS/ME is it makes you very tired, but unable to sleep. It’s very frustrating. I always think if I could sleep a bit better maybe I’d feel a bit better. But getting a good night’s sleep has always been difficult for me at the best of times; I’ve always been a bit of an insomniac. And since developing CFS/ME things have only got worse.

This is one of the most common symptoms of CFS/ME. And in some people it can become so problematic that they have ‘sleep reversal’ which essentially means they go to sleep in the early morning and wake up in the afternoon/evening. Fortunately I’m still on the same time as everyone else, but I could see how sleep reversal might happen. You go to bed later and later because you can’t sleep. Until one day you’re going to bed when everyone else is getting up.

I’ve always been pretty good with ‘sleep hygiene’ so just putting that back in place was the first thing I did. Sleep hygiene is just a series of things that you can do to help promote good healthy sleep. For example not reading or using a phone/computer whilst in bed – keep your bed for sleeping in. If you do things in bed where your brain is active, your brain gets confused and doesn’t realise that it should be turning off when you are in bed. Also, not drinking anything with caffeine in after six o’clock. Not eating your evening meal too late. Not using a computer in the hour before you go to bed (I’m really bad at this). Going to bed at the same time and getting up at the same time are also really important. I really like reading in bed, but I know if I do it regularly my sleep suffers, so I try to just do it very occasionally and randomly, and that seems ok.

So having put all the sleep hygiene measures into practice I still couldn’t sleep. Lying in bed absolutely shattered but unable to sleep is very annoying and distressing. You know you need sleep, but it just doesn’t happen. I talked to my doctor about it and as most doctors aren’t keen on prescribing sleeping tablets (they are generally addictive) she suggested I try taking some paracetamol before bed. For a while that helped, but the effect seemed to wear off. Next I tried taking chlorphenamine (Piriton) which is an antihistamine for treating hayfever and other allergic reactions. It has a side effect of being very sedating. And I did find it helpful for a while. In the end I started taking low dose amitriptyline, which is an antidepressant, but at low doses is useful for treating nerve pain and is also very sedating, so it is recommended for treating the sleep issues involved in CFS/ME. In fact it is considered the most effective way of dealing with the CFS/ME sleep issues. It makes me quite drowsy in the mornings, but I’m pretty drowsy anyway, so it’s difficult to know how much is the amitriptyline and how much is me. But the main thing is I sleep, often pretty well. The sedative effect does seem to have reduced with time, but it’s still effective enough to mean I get a decent night’s sleep for five out of seven nights. 

The other thing that has been very effective for me is Cranial Osteopathy. This has given me a dramatic improvement in my sleep patterns. It has helped me immensely, although the effect does wear off a bit a few weeks after treatment. 

The final thing that I have noticed is quite subtle. If I do too much I sleep badly and if I do too little I also sleep badly. I need to make myself tired, but not overdo it. This is an extremely hard balance to strike. In terms of my post about Energy Budgeting I need to spend all the money available to me exactly, with nothing or just one pound left over. If I am overdrawn I’ve overdone it and will have trouble sleeping. I’m slowly getting better at this balancing act, now that I am aware of it, but it’s not an easy thing to achieve.

‘[Sleep is] the golden chain that ties health and our bodies together.’  - Thomas Dekker

Energy Budgeting

One of the defining features of CFS/ME is something called post-exertional malaise. This is when you do an activity and then sometime later, often the next day, you feel the fatigue caused by that activity. It is extremely difficult to deal with. Not knowing if you have done too much until the next day is a difficult way to live. I’ve learnt to judge what is too much, but it is still a bit of guessing game because energy levels can vary from day to day.

I decided I have an ‘energy bank’. And in the bank there is ‘money’ (energy) and every time I do something it costs me money. Each day I get the same amount. So say I have 9 pounds in the bank one morning. It’s going to cost me 1 pound to have a shower. It’s going to cost me another pound to get dressed and another pound to have breakfast. I now have 6 pounds left. I will need 1 for lunch and 1 for dinner. So I’m left with 4 pounds. I want to take Walter for a walk, and this is really hard work for me and costs me 3 pounds. Now I have 1 pound left. I use it up in the evening playing the Sims.

The next day I have 9 pounds again. Again I need to shower, get dressed, eat breakfast and save 2 pounds for my other meals. I have 4 pounds left again. I need to do a load of washing and that costs me another pound. So I have 3 left, and after lunch I decide that I will go into town for a change. I know it will cost me all of my 3 pounds, but I don’t get out very often and I want to go. I have an uneventful and pleasant trip into town, but on the way back I notice I haven’t got much petrol left in the car, I really need to refill it even though it will cost me a pound (yes, I realise the irony). So I do that and I now know I will be overdrawn at the end of the day. When I get home I discover the washing machine has thrown a wobbly and stopped working mid cycle and little lights are flashing at me all over the place. Sorting it out and getting it working again costs me another pound. Then when I give the Walter his dinner, he gobbles it so fast he makes himself sick. I lose another pound cleaning it up. Then my husband phones to say he will be home late, and I’ll need to cook dinner. Cooking dinner costs me another pound. I go to bed 4 pounds overdrawn.

In the morning I get my 9 pounds again, but 4 of them have to pay off my overdraft, so I start the day with 5 pounds to spend. Showering, dressing, breakfast, lunch and dinner take all of those, leaving me with nothing. If I do nothing else today I will have 9 pounds again tomorrow. But if I do other things, I risk becoming more and more overdrawn.

I’m quite lucky, I usually have 9 pounds a day, spare a thought for those people who only have 1 or 2 pounds a day. I remember I used to only have 3 or 4 pounds a day and that was very hard, but luckily with time I’ve earned some interest.

There is a wonderful alternative explanation of this called ‘the spoon theory’  which I came across sometime after I came up with my ‘energy bank’. It’s a very good description of the same thing, but it is a little too simple for CFS/ME as it is based on Lupus.

The example I have given above is an extreme one. In reality my husband never phones me to say he won’t be home for ages and I’ll need to cook dinner, and I could have managed without getting the petrol. But I wanted to show what happens on those days where everything goes against you. It’s very difficult to deal with. Also, the reality isn’t quite this simple, some days I don’t have 9 pounds, I only have 7 or miraculously I’ll have 12. This will vary without rhyme or reason, but stress and illness definitely reduce the daily budget. And just to confuse things further you don’t actually know what your budget is on a given day, you have an idea, but you won’t find out until the next day whether you’ve overspent or not. Also you cannot save left over money from the previous day, if you don’t use it all, it just disappears.

Sometimes, I think: you know what? I don’t care! Today I’m going to do what I like and to hell with the consequences. And often I pay for it the next day, but it’s worth it. The best days are when you do this and wake up the next morning feeling ok, and you realise the budget for yesterday was higher than you thought and you haven’t overspent. You don’t have to spend today paying for the excess of yesterday. It’s just a shame it doesn’t happen very often.

‘Energy is the essence of life. Every day you decide how you're going to use it by knowing what you want and what it takes to reach that goal, and by maintaining focus.’ - Oprah Winfrey

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