Tuesday, 31 December 2013
Saturday, 28 December 2013
Owww. Ouch! Bleepy bleep bleep bleep. Yes that is how good I felt yeterday. And all because I dared to celebrate Christmas. How dare I try and be normal. Christmas Day wasn't too bad I spent the majority of Christmas day in bed resting and then came downstairs for a couple of hours in the evening. It was strange though excluding myself from dinner (even though I cannot tolerate it) but it's difficult to not listen to that voice that says that you should be joining in the festivities and that you are being completely unsociable. But it was the right thing to do, to help myself recover from Christmas Eve. Boxing day my symptoms were more prevelant, aching and fatigue. I managed to have a bath with help in the afternoon, trying to make the most of being able to get to the bathroom and not wanting to smell of course. I rested again afterwards in the hope of getting downstairs again that evening. Remember my basic target is to get downsairs everyday. I managed to get to the top of the stairs and went to shout down for help to get down, but that just ended up as a "help, me stand up and get back to bed." I was in too much pain and exhausted to manage it. It made me quite dissapointed as I was bored lying in bed and wanted some company but in the grander scheme of things that's the first time in a long time that I've not managed to get downstairs at least once a day. And I had a pretty good reason for not being able to. So I wasn't too down on myself.
Boxing day night the wind was terrible, but luckily I was so shattered that I managed to sleep well. I think though that listening to the wind made me huddle up more in bed so trying to get up yesterday morning was just agony and I couldn't do it without help. Damn bladder again, I would have stayed where I was if I hadn't needed to pee. I'm sure my Mum appreciated the 5am text for help too.
Yesterday (27th) was probably the worst suffering wise, all my muscles ached and my pain killers weren't having much of an effect. I thought though that if I could try and move around a bit it may help to loosen up the muscles and distract me somewhat. Luckily I managed to bum shuffle downstairs and plonk myself in front of the television for the afternoon. Woo back to back Cake Boss and the Downton Christmas special! This made the suffering more bareable but I was still clock watching for my next lot of pain killers.
One thing that did really help me through the post Christmas suffering though was the support of other ME suffers on Twitter. We all knew that we weren't the only ones in pain and could help each other through. I have 'met' some lovely peole on there, one even sent me a handmade personalised bracelet as a Christmas present. It's good to be able to reachout to people that know exactly what you're going through and can help you to see some brightness. It's also lovely to be able to offer support to others and feel part of a community, which is difficult when you can't socialise often. It's difficult to cope with the feeling of being punished for just trying to be 'normal.'
So enough of the rubbish and let me focus on the good. Because it's really important to find something bright in each day even though on the whole the outlook is bleak. Well actually Christmas Eve was filled with lovely moments and I was able to do as I planned (see my post It's beginning to look a look a lot like Christmas).
The day started earlier than planned as my nephews came round earlier so I lost a couple of hours rest. But I hate not being 'present' when my nephews are here. It's easy to get into the mindset though of 'I'm just sitting.' They came round early as they were full of cold and then of course in the spirit of Christmas generousity kindly gave me a cough. I love them really. Then everyone else kind of arrived at once. I met my cousin(ish)/Polish Goddess's new boyfriend (Hi Jon!) and cue giggles and some very in depth conversations about ME and mental illnesses. And how horrified we were about the sign language interpretter at Nelson Mandela's funeral being mocked. That man has reached the most prestigous height in his career to have been given the duty of such an event despite all of his demons of such a misunderstood illness. He was left on his own whereas they should work in teams infront of the worlds media and some of the worlds most powerful people yet he fought to get through, he couldn't very well leave the stage. How many people when faced with trauma and distress could keep calm? Schizophrenia does not make someone a violent person. If he had suffered something physical on that stage he would have had sympathy but instead he was mocked. Okay, sorry for going waaaay of topic. It's just something that really riled me. It annoys me that mental illnesses have such bad reputations. Most people that are diagnosed with a mental illness just want to be able to live normal lives and are scared not be labelled.
Anyhow back on topic, perhaps that's where I used up much of my energy. I managed to help myself to some food and feed myself so that was a plus. Most of the evening I was sat with my feet up. At one stage everyone else was in the kitchen and I was the only one in the living room, which felt a bit odd. By the time we got round to giving out presents I was really beginning to flag. I couldn't hand my gifts out and was just sat like the Queen of Sheeba as people came to me bearing gifts. I wished I'd have looked that good and not a baggy eyed zombie moulded to the sofa. I couldn't even open my own presents so my Mum had to open most of them for me. Her trying not to open them and peaking what it was before I got to see. I got one present in a gift bag which I thought I could hopefully manage but someone was a bit over zealous with the selotape and the gifts inside were all wrapped. So tip number one for giving gifts to people with chronic illness or pain; use a gift bag and not seal it shut like an Egyptian curse and you don't need to wrap the gifts that are inside. Tip number two; be economical with the selotape whether it be on a gift bag or wrapped present. And tip number 3; more expensive thicker wrapping paper is very nice but very hard to rip open (yes I know you should unfold it neatly) but ripping is easier on our more weak muscles. So cheap wrapping paper is much better for us. Hopefully it hasn't ripped too much in the wrapping and delivering process.
I recieved some lovely gifts. Very thoughtful things that are much needed like new pyjamas, new slippers, dressing gown ( IT'S SO FLUFFY!) and books. A spa voucher, which I'm thinking maybe to treat myself to an Indian head massage and facial. I do enjoy back, neck and shoulder massages but it can be touch and go with the Fibromyalgia whether it does more harm than good. Lying on a heated surface in the sauna and steam rooms should really help though and hopefully I'll be able to manage a jacuzzi. My most touching gifts, other than the personalised bracelet, was the two spoon necklaces I got (see photos). They will remind me to use my spoons wisely and on the people that deserve them. That it's not wrong to put myself first. Or to waste spoons on matters beyond me or people that do not deserve to occupy too much head space. I also feel that in giving me these spoons it's a symbol of the support and understanding they give me. That they are willing to use their spoons to help me where they can so I don't have to suffer as much. Oh wow this is emotional. Are you crying Mother dearest?
Afterwards I was really struggling. I actually fell asleep. Unfortunately or perhaps fortunately it was during a conversation with my cousin and Nanna. I've heard most of it before so I don't think I missed much. My parents tried to get me up to bed with me looking like a drunk being escorted from a nightclub. Getting up the stairs was interesting. I fell asleep and started to slide down. Waking up because of the pain of my parents trying to keep me upright.
So was it worth it? Of course it was. The escapeism of normal life is refreshing. It's good to be included and to join in where you can. Otherwise morale can really suffer and as I have said time and time again I am so conscious of not getting my self into a severe state of depression again. It truly scares me. These moments to spend with family and friends are so important and keep us strong. I couldn't cope without them. I only wish that we didn't have to suffer for it, just for trying to get some normality and fun. It's one of the most unjust things about chronic illness.
So to all sufferers I hope you are resting and regaining some strength. Talk to one another. We can help each other through. But I also hope you feel it was worth it. That you made some lovely memories and had a good time. And for all non spoonies I hope you had a great Christmas too.
Monday, 16 December 2013
This is something that I was taught at chronic fatigue clinic and I feel is the most valuable piece of information that I learnt there. It's something that I can use every day, no matter the type of day I'm having. It's all about how you organise yourself and of course those ever useful spoons. I thought that it would be good to post this now, in the run up to Christmas and also to help back up my posts on travelling, which I hope to continue in the new year. And just to make it clear the p's have nothing to do with waterworks. That is another story- naughty amitriptyline.
So the first P stands for Planning. As many spoonies know it takes a lot of planning and preperation in order to do a lot of things. It often feels like a military operation. Not just in getting out of the house but planning how best to use your spoons on a daily basis. So with that in mind it is always best to plan on the day, when you know roughly how many spoons you have, what your symptims are and what you're capable of. The day before might have been a good day and may fill your head with plans for the next day but chances are you may not be feeling the same as the previous day. Therefore you may not be able to manage what you had planned, which can lead to frustration and disappointment. Of course some things do need to be planned in advance, special ocassions or holidays, even doctors or dentist appointments, where you can in some respects try and reserve some energy. And you need to be as prepared as possible for those events. But think how often we have to change plans on the day or last minute because of our health. Hopefully people will understand in those situations and there's always hope that you'll make it next time. Of course the plan should also be flexible enough for any fluctuation in your symptoms throughout the day. I sometimes like to make a tick list as it's something that I used to do at work. It feels rewarding to tick things off and feel a sense of achievement.
Once you have a rough plan, it's time to utilise the next P, which stands for prioritise. Putting the tasks on your list into order of importance. And this is where the D's come in. First ask your self; Does it need doing? Okay it might be on your to do list but how realistic were you being with that list? Again, here think about the best way to use the energy that you have and also consider the reasoning behind doing something. Is this connected to your own or other people expectations? Take a look at my post on expectations. If people are coming to the house do you absolutely need to hoover the whole house? Or is that something that has been impressed upon you? Chances are unless the house is an actual wreck then they wouldn't notice, unless you pointed it out. They've come to see you not your carpet. So if something doesn't need doing or doesn't need doing specifically on that day then ditch it!
The next thing to ask yourself is does it need doing by me? To use a Christmas example; you may have presents to wrap but is there someone that could help you with this? Provided the present isn't theres of course. Wrapping presents is consuming. You can always go the gift bag route though as I have this year. My arms are too weak for scissors. Again expectations can come into play here, often in the form of standards. Believing no one can do as good a job as you could, or they wouldn't do it how you would. And if they did then they'd only do it wrong and you'd have to do it the right way after they've botched it up. Decide what you can delegate, to help save your spoons. This might be useful for bigger tasks such as going food shopping. Can you ask someone to do this for you? It's difficult if you live on your own of course, but perhaps a neighbour or friend could help with some tasks. Putting the bins out on recycling day, walking your dog or mowing the lawn for you. I think my Dad will say that I have become a master in delegating. Or that "Daaaaaaad?!" is one of the D's. But I'm very lucky to have help and the majority of the time I genuinely couldn't do what I've asked for myself. Such as cook, or make a hot drink.
Now that you know the tasks that you can do, ask yourself Does it need doing now? For example taking a shower, do you have to have it at that point of the day or can you wait? And then the last D is for Do it! Not that it is ever that easy sometimes. Depending of course, on the activity. Watching television or reading might be easier than say emptying the dishwasher, depending on whether you are having more mental or physical symptoms.
Some tasks will also require the use of another P, which is a secondary form of planning. It's about making sure that you have the necessary 'tools' at your disposal to undertake the task. Imagine a window cleaner, after putting up the ladder they do not go up the ladder and then come back down to get a sponge, they take the sponge with them to avoid any more unneccesary excertion. So if you plan on cooking make things a little easier for yourself by having all your ingredients and utensils together. You can always take a break between getting things together and starting, obviously where food hygiene allows. Or even for something smaller like watching the tv, make sure you have the remote handy and any drinks or snacks you may want.
Finally the last P stands for pace,using pacing mindfully whilst doing some tasks can help. Do them at a leisurely pace and take breaks if needed. Try not to multitask as well, do one thing at a time. I am terrible for watching television and being on the internet, which means I'm using up more spoons and concentration.This is where you need to listen to your body carefully and learn to stop before you become overwhelmed with fatigue. Remember that tiredness is a warning signal. So it is important to learn how much you can do before you begin to feel tired. By doing this you are also gaining some control over probably the most important P of all ( yes I know I said finally for pace but that was for the planning process) post exertional malaise.
Perhaps I have explained it before, but post exertional malaise is the state that M.E sufferers experience after doing an activity. Sometimes it occurs straight away, other times it can strike a day or a couple of days afterwards. It's true what they say about how you suffer more the second day after a more active task. How long you will experience post exertional malaise can also vary. It may be just a day or it could be months. I am certainly still suffering from going on holiday in October. But it doesn't just occur after big events it can happen after simple activities too, like taking a shower. Post exertional malaise really sets M.E apart from other illnesses as we lack the ability to recover quickly. We often call it payback. So any ways in which we can reduce the stress of an activity i.e by pacing it can help us not suffer as much payback. It's good to find a baseline of how much activity that you can withstand without going into post exertional malaise. I have a post called things I learnt at clinic; diaries which explains one way of helping you establish a baseline. Remember though that your baseline can change if you experience a flare up or perhaps another illness. I haven't done a diary since relapsing in May because most of my time I need to rest and I'm getting better at reading the signals to stop before I become overwhelmed. But hopefully in the new year I will start establishing my baseline again.
I hope this post has been useful and that you can put it into practise. Perhaps to help you through the holidays and also on a daily basis.
This will probably be my last post now before Christmas ( as I need to rest) so I wish you all the best and I hope you can enjoy it as much as you possibly can. Take it easy.
P.S my blog now has a Facebook page. I've set it up to share smaller things that I can't post on here. There will be lots of inspirational quotes, things to make you smile and laugh and also some crafty things to help keep yourself or any little ones entertained. I already have a Christmas craft album. So come join in at www.facebook.com/memyselfandmeblogpage
Saturday, 14 December 2013
However they are only momentary stresses. In the modern world stress has become a long term condition. Again to use the Christmas analogy or the pressures of work and providing for a family, they are issues that are faced every day and many people bury their heads in the sands to them. In the case of so many people that now suffer with M.E, for how long did we keep driving through all the signs that we weren't coping and try to carry on as normal. Despite 6 hospital admissions in as many weeks, falling down the stairs, or my face blowing up to Quasimodo proportions or having a major panic attack at a train station I didn't get the message. But that was my body saying " Hello! I really can't cope!" And there lies the nub of it, we are not designed to tolerate stress for long periods of time. Like I said, physiologically we are still cave men and women who should only experiene stress when a saber tooth tiger comes our way. But today's stressors come in many forms. I wouldn't have said that what I was doing before the onset of my M.E was overly stressful, because I was having the time of my life. But at the same time I was in a high pressued environment, working long hours, leading a team of people, theatrical temprements and all that.
So in general a lot of us are more exposed to stressors for longer periods of time, which we are not designed to deal with. Of course, some people do and they fare just fine. However if we are in a lengthened period of stress it can affect our health both physically and mentally. Being constantly in a state of stress, where that fight or flight signal is on high alert constantly is symptomatic of anxiety, and anxiety can be a debilitating mental health issue. Trust me, I've been there. Anxiety is a clear signal that your body and brain are not responding to a stressor in the right way and therefore sending you into turmoil. In many cases instead of dealing with stresses as they arise or letting issues bottle up can mean that you are over exposed to stress and remember we are only meant to deal with it momentarily. We can also be dealing with many stresses all at once, again the pressures of work and financial issues that stem from that. By being exposed to stress or multiple stressors without dealing with them can make people vulnerable to physical and mental illnesses. It can also mean that we are tuning out of our bodies natural instincts. Stress like pain is a warning signal that you are in danger of harm. So if we stop listening to that and just carry on that natural response can become weakend.
Again to go back to the onset of M.E, how many times did I ignore those pain and stress signals and plough through until my body literally broke down and I ended up in hospital because I was asleep for 3 days. And now my responses to stress and pain are all mis-wired. Our bodies are constantly telling us we're tired even though we have had enough sleep or the old "but I haven't done anything to warrant being this tired, I only sat up." Then there is the pain when we know that we shouldn't really be experiencing the type of exruciating pain that we are, there's no inflammation, no pulled muscles or broken bones. And if you have fibromalgia too, then just the lightest touch can make you wince in pain or the weight of a blanket. I can no longer wear close fitting leather boots because of the pain at the back of my legs. The sound of a phone ringing or doorbell can makes us jolt.
But as the article says just because we do little doesn't mean that we are immune to life's other stresses. We are still a part of the larger world, even though it doesn't feel like it at times. Whatever is affecting your family and friends still affects you. Only we have the added pressure of doing very little about it. We stress about finances and not being able to earn the money that we need to live from being able to work. About whether we're annoying others by needing them to care for us and the stress of not being able to do the very simple things that we used to take for granted, feed ourselves, hold a book upright, concentrate on a television programme. And all that added stress can make our symptoms much worse. Last week I had my first panic attack in ages because I was so wound up. By body just couldn't cope and went haywire. Unfortunately this meant coming on a week earlier and having a 2 week period ( apologies Male readers I'm just trying to show just how out of sync I was.)