Sunday, 21 June 2015

Forget the boom and bust?

 If you are diagnosed with M.E and are referred to a clinic in your area, one thing they will teach you is all about trying to avoid boom and bust and learning to completely redefine the word pace... you've  rolled onto one side now DON'T ROLL OVER AGAIN FOR AT LEAST ANOTHER HOUR!! This is the only real "sound advice" you are given. And that's if there is a clinic in your area. In many areas there isn't and you simply have to rely on the information that your gp does or does not have.
 
Anyway... So what is boom and bust? And why should it be avoided? Boom and bust is a term that in relation to chronic illnesses such as M.E, Fibromyalgia and POTS (to name a few) is where you have a burst of activity as a result of feeling more energized and having a better day. Perhaps "overdoing it" because you want to make the most of having that much energy or wanting to get a task done, especially if you have been wanting to do it for a while but not been well enough to. It can be so frustrating lying there unable to do the simplest of tasks as all the things you want to do build up. Consequently you can then experience bust, a crash to earth as a result of the activity. Where your body feels physically and mentally assaulted. Bust is also known as payback or post exertional malaise, which is a defining symptom for M.E patients. This is because the mitochondria, the powerhouse in our cells that turns nutrients into energy, is defective. This means that once you have used up your energy it can take a long time for it to build back up. When experiencing bust some will of course feel silly for having essentialy made themselves feel that way. Feeling it is all their fault they are suffering as they are. But of course it isn't your fault. It's the illness. And the fact that you are ill is certainly not your fault.
 
So the question is should we avoid the boom and bust? The thing is each time we use up our energy we don't know just how much our body will react. Sometimes just walking to the bathroom and back will wear you out as much as a trip to the supermarket. Unlike our phones that easily tell us how much battery we have left our bodies don't. The fact that we are always at the mercy of our symptoms helps blur the lines even more. Predominantly our energy is used on things that we cannot really avoid just simple household tasks or things we need to do to look after ourselves. Especially if we live alone. And yes we can often 'over do it' because like I said the temptation to do as much as you can while you can is one we will often fall prey to. We can of course get help but unless we are completely bed bound then the ability to do things for ourselves is one that at least makes us feel that little bit more normal and not completely useless, because we often feel that we have lost our independance. However although they are necessary, these are only the smaller things, although of course to us they can also be big achievements and although they say life is made up of the smaller moments and I can see the truth in that statement I'm not sure that quite applies to household chores and making sure you eat and drink. If experiencing boom and bust can be so easily done by these smaller things then what about the bigger things? Should they be avoided at all costs?
 
It is the bigger moments that can really leave their impact, whether that be positive or negative. Sadly we can't really control some of life's sadder events or know when they are going to happen and of course that is going to cause a lot of post exertional malaise and much grief. Therefore in those incidents it is highly likely we will use as much energy as we have and ultimately boom and bust. Moving on to the more positive big moments/events that create fond memories and make up much of our achievements. From graduating, getting married, having children to the holiday of a lifetime or a gig you have always wanted to go to. When you have a chronic illness getting to achieve these things can seem impossible. Your head is full of questions and doubt. I will leave school/college with no qualifications. No one will want me now that I am sick and need a wheelchair. How will I ever even meet someone when I hardly leave the house? And when I do I am always accompanied. You worry that travel will be too stressful and painful and that you won't have the control you feel you need. That you are far away from where you feel safe and comfortable in an environment you are not used to. You also feel like you would let others down. That they may have to miss out if you need to leave early from an event and feel bitter towards you. You often think it's probably too much effort and too much risk, and therefore not worth it. And of course that ultimately you will experience post exertional malaise afterwards and feel like you have been in an accident not at an enjoyable event. And that's no fun at all! Consequently your quality of life can be poor and you feel like you are missing out on so much that life has to offer.

I was reading through an old blog post the other day called reminicsing, in which I was looking back to the time I was more moderately affected and the time shortly before I was officially diagnosed. In it I said " I remember being on holiday just before my diagnosis and telling myself that although my life was about to dramatically change that if I could still steer it in a good direction and make new memories then I had to make the most of things when I could. I'd try my best to not just be defined by illness and keep developing the condidence I'd gained."  This is certainly a philosophy I still try too live by. Even if it's not one I can put in to practise that often. 


 Recently I went to the theatre to watch Pasha Kovalev from Strictly Come Dancing. Words cannot describe the effect that man has on me, haha. It took a lot of resting beforehand and lying very still to have enough energy to go. This is another thing a clinic would advise against, oops! I was so very thankful that on the day I did actually feel well enough. Going to the theatre brings up a lot of other complications for me such as noise and light sensitivities but luckily I coped well. I had packed sunglasses just incase. Naturally when you are at a dance show you are going to want to clap along and applaud and when Pasha tells you to dance you're damn well going to shimmy for him. However I caught myself thinking a few times, perhaps I shouldn't be clapping as much or doing the wheelchair boogie. That I would have hell to pay for it in the coming week. But that thought quickly got lost as I was emerced in enjoying the show. After the show I wanted to go wait at the stage door to meet the dancers. Again I thought Siân you probably shouldn't push your luck here and just get yourself home and back in bed. But if you have a choice to meet Pasha and he is meteres away what are you going to do? I think you can already tell the answer to that from the photo above and let's just say it was totally worth it. I had an amazing evening. This was in part due to the beautiful message of the show, which was all about positivity and Pasha wanting to make sure his audience went away feeling uplifted.But also that because for a few hours I felt less like a poorly person and more of a normal person. So full of life and happiness I very nearly cried, but I didn't want to shed any tears on such a good night, even if they were happy ones. If I hadn't have been in a wheelchair I could very easily have believed I was. And that was such a wonderful feeling. 

The point I'm trying to make without gushing too much is that opportunities like that don't come around that often, especially for us. For me personally I try and grab them. Whether it be from a trip to the theatre to hoping to be well enough to go on holiday. I have to plan very carefully and be over prepared for every situation, but I try not to let that detter me. It was my choice to book the tickets and give myself that opportunity and one that could very easily have not worked out by not being well enough to go but at least I had gave myself the chance. I know some people will think that if you then don't get to go that you are going to be really disappointed and hateful of the illness; and yes it would be disappointing but it still hurts to know an event is happening and doubt stops you from booking. Sometimes you simply need to take a risk and hope it pays off.

I'm not going to lie and say that it didn't hurt or cause PEM afterwards because it did. That is the nature of the illness and something I expect. Suprisingly it wasn't nearly as bad as expected so I got lucky there. Plus as I recovered I got to relive the night many times in my head and that made sure I had the biggest smile on my face. The great memories outweighed any pain.

So maybe booming and busting is a bit reckless and not advised but it's up to you to weigh up that risk and decide if you want to be more responsible for not causing yourself extra suffering or more responsible for your happiness and quality of life. Perhaps I am coming at this from the perspective from a former sufferer of depression and anxiety who feels the added pressure of maintaining my happiness. And perhaps you would choose differently. I really can't say I blame you. Payback can be a bitch and be really hard to deal with. I'm lucky I have people to help care for me 24/7 that can help me through the worst of it but I still dislike being reliant on them for basic care on those horrendous days. I don't wish to force this opinion on anyone. We each have a responsibilty towards our health. I only wish to say that we all deserve to be happy. And if we have the power to control that sometimes then it can be worth taking.

Siân
X

* Please note that booming and busting should only be on ocassion and that pacing for the majority of the time is still important for maintaining your health. Also note that this post is not an advise post and that each individual should take responsibility for their own health and decisions. I am only expressing my opinion using my experiences. However I do wish that you can all be as happy as you possibly can. Having a chronic illness is hard and finding ways to keep positive are important.

7 comments:

  1. Urgh i hate it! - not your post Queenie but booming and busting. I really struggle when I have more energy to not over do it these days, I think because I get so bored even on better days so I try to do more... I need to work on this!
    It's true to keep it to a minimum for special events.
    Hope you're having a good day!
    Emma Xx

    www.emmaslookingglass.com

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    1. I know what you mean. It's not the best. But sometimes so hard to avoid. Oh to be normal! That would just be lovely. We don't ask for much do we?

      Big hugs lovely lady
      Sian xx

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  2. I think you are totally right in what you say. There's a difference between surviving and living. I have kept myself under threshold and within limitations now for 8 months (since my body essentially crashed on me). It has undoubtedly helped me a lot. But I've been really frustrated because I feel like every day is the same and I have no life. Recently I've done a couple of things that were "pushing it" and I damn well enjoyed doing them!!! I think it's a balancing act. Definitely pace the majority of the time but when there is a special occasion, don't miss out. I think you're right that the key is occasionally making exceptions. And also giving yourself the time you need afterwards to recover. When boom and bust becomes a regular occurrence your health is going to take a downward spiral. But if it is done sensibly and only occasionally, the after affects will hopefully be short lived and not be detrimental in the long term.

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    1. Thank you for your comment Donna. Illness will drive you nuts at times. Just look at how many statuses you see from healthy people that get colds. But you're right sometimes we have to just grit our teeth and hope and at least try things. As long as we have the right people with us we know we can come home soon enough and they're will be no judgement on their behaves. Yes I think if we behave most of the time then we can hopefully build our tolerance for coping with bigger events too. With some planning and knowing when to rest hopefully we can still enjoy some quality moments. X

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  3. I'm glad you managed to have a good time. I think generally speaking boom and bust is something we need to stop for our physical health. But every now and then it's too important for our mental health to just be able to enjoy something regardless of the consequences. I know when I first got sick I was still at school and sometimes my mum would tell me to go do something fun with my friends even if it meant having to miss some days at school recovering. We have to live as well as survive.

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    1. Thank you and thanks for your comment. Yes in general we need to avoid it to maintain a good level of health. No one wants to make themselves worse. Keeping our mental health in check is so important. Aww your Mum sounds great. Looking after your wellbeing. Experiencing life is so important. Especially when you are sick at such a young age.

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  4. I am the queen of boom & bust. I am so bad at pacing and want to do everything on my good days because I dont know when I'll be able to do it again. Im working on it though and getting slightly better
    Beth x
    Mermaid in Disguise

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