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.)
Wednesday, 4 December 2013
Thursday, 21 November 2013
Sorry it's been a while. I've been getting lot's of R&R after my birthday a couple of weeks ago. It's been a mixture of needing to rest and not having much choice but to rest as I keep falling asleep. It's not all been bad though. I've managed to get out to stock up on Christmas books, with my birthday money and to get a few more Christmas presents. So I have been trying to use my spoons wisely. Getting out if possible.
There's been some emotional issues and stresses that have been taking their toll as well, so I've been trying to be careful with myself. Recognising that emotional and psychological excertion is just as exhausting as physical excertion. Some of the stress has really taken it's toll on my body and left it rather out of sync, so again I've been trying to be good to myself. But this is where getting out has helped too as it stops me ruminating on matters and means I can divert my attention elsewhere. So getting out has been quite important, where possible of course. It's meant a bit more time in bed but that's not too much of a hassle. And all this together has meant a lack of blogging as I try to prioritise what needs to be done, which at times can still be difficult.
Anyway, I managed to get out for my birthday, so I was made up with that. As were my family. I had a wonderful time and felt very blessed. We went to a steakhouse but because my arms were a bit weak I needed to ask for help cutting it up (from family that is.) Unfortunately though the steak wasn't as good as they usually are and I actually found it quite difficult to eat. The chewing was actually making me feel quite tired. I should have probably stopped eating it but my conscience and appetite (woo appetite) said keep going. That night, one side of my face and head felt really sore and like a burning sensation. I took some pictures on my phone to see if there was any changes in my face. Fearing that I was having a stroke. The next day it developed into more of a headache, but also in my face, jaw and neck. It wasn't like a usual headache or a migraine type, and I had no oversensitivity to the light but it was like some kind of weight on my head, pressing down. Because of the pains I found it difficult to eat and drink. So chewy food, (of course you should always chew your food though) was out and drinking was strictly through a straw. Luckily I'd already swapped my breakfasts to porrige. It was also really painful cleaning my teeth. Sounds awful I know but at least I could reason it and I was still made up that I had managed to get out for my birthday.
I've also been experiencing much more aching in my neck and arms lately. My arms have been pretty weak too. I've needed to be fed much more frequently, as in someone feeding me not just giving me something to eat. I did try with my left hand as that seemed a bit stronger but I just ended up with mash potato all over me. Again I've been being careful with my choice of food so I can try and do as much for myself as possible. I've needed my Mum to clean my teeth for me too but it's best that they get done.
On a bigger note I made a big decision in deciding to sell my car last week. I've had my car for 10 years and we have had some adventures. She was my lifeline when I moved away for university at 18, as she got me home every weekend. Oh how I hated that place! I think the amount of miles I clocked up in those few months is testement to how right the decision to leave there was. But for the past few years she's mostly been sat on the drive and only getting to go out when I had VERY good days or my Dad drove her. It was becoming far too much money for something that I wasn't using. For a long time I could justify it by thinking that I'd hopefully be up to driving again soon, but even if I were I'd need someone with me and it's not just about the driving. It's the doing what you've gone out in the car for. All together that is far too much right now. My legs are too weak to be able to manage the pedals and fatigue too extreme. Plus there is the other set of wheels, known as my noble steed or wheelchair in my life now. And thank goodness for them for allowing me to get out and about when I'm feeling well enough.
Hopefully I'll be able to get back to my travel series soon. I have most of it written so it just needs typing. Plus plenty more posts in the pipeline. But for now I'm in need of much more r&r and tlc.
Saturday, 9 November 2013
To help me celebrate my birthday and recognise that today is not the only day that I have breakfast in bed please donate $1, that's like 80p. Or help spread the word by watching the videos sharing the link or #canary film on twitter.
To donate you need to visit http://www.kickstarter.com/projects/959776320/canary-in-a-coal-mine and you can make a payment through your amazon account.
Right I best go take a nap and rest.
Friday, 8 November 2013
Travel insuranceFirst rule always take out travel insurance. The chances are that nothing will happen that will make you need to claim on it but you know what they say it's better to be safe than sorry. As chronic illness sufferers too we are in a more likely category that something could go wrong. For example you may be too sick to travel and need to cancel. On a basic level a good policy will also cover you for any loss of luggage or cash. Or in the event of a delay cover the cost of food or extra accommodation. It's always good to have that reassurance. So here is my tips relating to travel insurance:
* Look around for a good deal on your travel insurance. If you have access to the internet then use an insurance comparison site. Here is one that compares policies for pre-existing conditions
* Make sure that you choose a comprehensive policy that covers a range of things and has a larger medical allowances quote. These may not be the cheapest but ultimately will offer you more benefits should something happen. If you can find a policy with low excesses too then all the better.
* Note that some companies require you to telephone for a quote if you are aged over 65
* As you have a chronic condition it is advised that you take out the policy over the phone, to the medical screening helpline of your chosen company. Although some will let you do so over the internet, some from the link above for example. If you already have a travel insurance policy, either through your bank account or a yearly subscription you will need to inform them of your condition via the phone for most companies. Because you are declaring a condition they will run you through a series of questions with yes or no answers to determine whether you can till be covered by their policy. If you want to download copy of the possible questions, these are from the post office insurance, visit the link here
The main causes that would mean that you wouldn't be covered or would need to pay extra for your travel insurance are related to heart conditions, cancer and terminal illnesses. Or whether you are travelling against medical advise.
* Check the wording of the policy that you take out or ask the advisor on the helpline to read it out for you. Ideally you want a policy with a good amount of medical expenses and to ensure that should you not be able fly (or whatever transport you used) home that you are covered for someone to stay with you. Meaning they can claim back any additional accommodation costs or flight change costs. Some policies will also cover the cost of someone coming over to be with you in the event of an accident or illness. I think that this is important to have on your policy if you have a chronic illness, because of our obvious need for the additional support.
* It is always best to inform your insurance company of any existing medical conditions as it's always best to err on the side of caution, even if you are not likely to need to go into hospital. Let's face it hospital is the last place you want to be with ME and it's not as if they can do anything about it. However should you need to make a claim it is very easy for insurance companies to turn down that claim if they find out about a pre-existing condition. Doctors records for example or hospital appointments. I have heard of people being turned down as they have had an outpatients appointment. So it's best to be safe and most of the time it's at no extra cost.
Wednesday, 6 November 2013
Tuesday, 5 November 2013
By having these experiences I have been able to put together some tips that I hope will encourage others to get away. Most of them relate to travelling abroad but can also be applied to travelling anywhere. I have thought of so many things that I have decided to break the tips down into a few posts rather than one big long one. For my benefit as well as yours. Then I will put them all together on their own page, like my tips for shopping.
A huge contributor to my getting away this year was that I knew where I was going and I have become friends with the owners of the hotel and restaurant so that took away any anxiety. Remember me telling you about having to cancel my holiday to Turkey because the location was not suitable. Wheelchairs and mountains don't mix very well, nor does needing to take a bus to get to eat every night and not an accessibe bus at that. Of course I did not know that I would be in a wheelchair when we booked but I even had I not needed one I think that I would have struggled with the location. So this brings me to today's tips, which is all about the value of research. Basically research, research, research. Find out as much as you can. Therefore when you get there you already feel reassured. It is a big thing for many people with chronic pain or illness to be able to get away, so comfort and knowledge is power. Below I have put together some tips to help people with chronic illnesses get away.
Research- This is always best before you book. Find out as much as possible about where you're going and staying. Tripadvisor www.tripadvisor.com is a fantastic resource for researching your resort and hotel. Read the reviews and forums about the resort. You can even ask questions if needed. The majority of resorts worldwide have their own forums, where you can find unbiased information from people that have actually been there. If you are in a wheelchair try to find out how accessible the resort is. Remember other countries have different or no policies about access for people with disabilities. Some things to consider are:
* Does the hotel have adapted rooms for guests with physical disabilities if you need one?
* Are the doors on the rooms wide enough to fit a wheelchair? If not would you be able to manage from the door inside?
* Is the hotel in a central location, close to restaurants etc or the beach? This means that you do not need to go too far to get to them and can easily get back to your hotel if you are feeling unwell or tired.
* Does your room have some cooking facilities incase you cannot get out to eat? Also a nearby shop from which to get ingredients.
* Does the hotel have a lift?
* How accessible are all the areas of the hotel? Are there ramps?
* What bathing facilities are there? Would you be able to get into a bath? Is the shower large enough for you to put a chair (plastic of course) under it?
* Does the hotel have a bar or nighttime entertainment? If so ask for a room away from those areas.
* Does the hotel have entertianment on during the day? Is there somewhere that you can avoid it if you want quiet time.
* What is the weather like there at that time of year? Can you cope with the heat, without it triggering or worsening any symptoms?
* If you are affected by the heat or do not want to be out in it constantly does the hotel have shaded areas where you can sit No one wants to be stuck in their room on holiday, unless they really need to.
* Consider asking for a room on the ground floor (if accessible to you) they are usually cooler, which may help you sleep better.
* Speak directly to the owners. Are they helpful? It can make a real difference knowing that you are going to stay somewhere where the owners are considerate of your needs and shown willing to help in whatever way they can.
To reiterate the more you know about where you're going and staying the better as it will take away some of the anxiety of how you are goin to cope in a strange place. I hope these tips have been useful. Hopefully it won't be too long a wait until the next installment.
Saturday, 2 November 2013
Whilst I was on holiday I read a book called The woman who went to bed for a year by Sue Townsend. I picked it up thinking that judging by the title I could probably relate to it. Anyway I didn't find much similarity and whilst I didn't much like the book ( I know what it's like to go to bed for a year and it's not as fantastical as the events in the book) the reasoning behind why she went to bed in the first place is very commonplace. To give you a quick brief, not to spoil it for those who may want to read it, the woman that goes to bed takes to her bed does so on the day that her twins go off to university. She sees this as a landmark to relinquish all her responsibilities. The tasks that as a wife, mother and houseowner she is expected to undertake and instead to get people to look after her for a change.
Expectations are something we are all familiar with. Whether it's as a child and being expected to be on your best behaviour and to always try your best. To the expectations we have in our jobs and personal lives. But how much of what we percieve is expected of us is real and how much is what we believe is expected of us? Has something that we believe that we are expected to do has simply become habit. To use the example of someone that always cooks the dinner, has this become habit, something that you have gotten used to doing or are you genuinely expected to do so? Do you fear that if you didn't do something then you would be percieved as lazy or neglectful? To put things into perspective if again for example you never cooked dinner would you cause your loved ones to starve? Would it cause an argument? These are all things that can run through our minds. Irrational things but things that keep us in the habit of doing something.
One trick is to learn where the expectation that you feel stems from. Or from whom it comes from. Could it be stereotypical or gender related? Remember in my post about personality, in particular type A personalities I spoke about how it appears many more women develop ME than men and how this can be down to the amount of roles that women take on. Like the character in the book for example. I have heard many 'older' women with ME say that some of their expectation stems from their own Mothers. If they do not have a meal on the table for when their partner comes in from work then they hear their mothers voice saying that that is part of a wifes role. Of course it can be applied to many situations. And can be built upon. The more you do something because you feel you are expected to do so the more that you are expected to do it. What we can often find though is that a lot of our expectations stem from within ourselves. We live in an age now where we do take on many roles. Where we can get information and answers quickly. And we want them quickly because we can't afford to waste time. Time can mean money. This is all particularly true if you have a type A personality. You can literally become your own worst enemy with the things that you expect of yourself.
But when you become chronically ill what happens to those expectations? It can be difficult to no longer do the things that others have become used to you doing. That you have grown accustomed to doing. The fear that people will think that you are being lazy. That you don't work so you should be able to cook, clean or pick the kids up from school. That if you don't do it no one will. Or they won't do as good a job as you would have done. All that has to somehow become tolerable. And while it is so easy to think that you are letting your standards slip and even being disgusted with yourself, thinking like that can be dettremental to your health. Somehow you have to learn to let things go and let others do things for you. And to get them accustomed to the idea that they need to do much more for you. So that you can just focus on getting through the day as best as you can. But it can be demoralising, heartbreaking even. Especially if you were highly independant and active before you became ill.
I still on occasion have trouble dropping off to sleep because I feel that I have not done anything that day. Like somehow I have not fulfilled some quota of activity. Asthough to warrant sleep and signal the end of the day so much needs to happen before then. I realise that this is a part of my type A personality and I know that theres a chance that I will always have similar feelings. Afterall I'm not sure if I would like to be completely at home with the idea of 'not having tried.' I know I must change those expectations on myself. Learn to say "you did the best that you possibly could within the circumstances of today." And not chastise myself if that is only to get out of bed once that day. On the other hand I know that I am very lucky to be surrounded by people that will do a lot for me, without question. That when I can do things for myself that they realise how much of an achievement it is for that day and accept that tomorrow I may not be able to do it and therefore they don't place that expectation on me. Yes, given the circumstances I think that I am a lucky bunny.
Monday, 28 October 2013
Sunday, 20 October 2013
Friday, 18 October 2013
I've just been watching BBC news and one of their top stories was about elderly people being vulnerable to lonliness. That loneliness can be as dangerous as smoking and drinking. The news piece for me was actually quite difficult to watch, of course not just from the prospective of our elders being lonley but for those of us suffering from chronic pain and chronic illnesses too.
Since I've been back from my holiday I have been taking caution. Knowing that my body is suffering from the travel and not wanting to push it too much so that I end up feeling worse. Of course I knew that this is what I would have to do. Because I have been resting and taking care I haven't felt too bad. Stupidly I ran out of tramadol last Friday and hadn't realised until then, so I had to suffer the weekend without any. And indeed I did suffer. My fibromyalgia pains have flared again, where just the slightest touch has caused a crazy amount of pain and even tapping the screen on my touch screen phone was painful, as well as holding my phone.
But mainly since I have been back I have felt really sad and somewhat lonely. On holiday I was conversing with different people everyday. Okay, I wasn't out and about much but I was 'out' every day. It helped that I knew the family that owned the hotel where we stayed and the family that owned the restaurant where we eat every night, so there was always friendly conversation and lots of laughter. I've also been learning Greek to be able to talk more with them, even though they speak perfect English. On holiday I spoke to people of all ages, from a couple in their 70s to a cheeky Greek 2 year old. People that I had met last year and people that I simply met sitting around the pool or in the hotel bar. Just striking up conversations about a book they had read or the pool gossip was mostly about some noisy guests.
I don't know if the change has made me feel worse but I definitely have not been feeling too chipper. This is why I am grateful to have my wheelchair because it means that on better days I can get out. I don't have to be stuck inside. Of course it can make you feel self conscious. You wonder what people are thinking. Still though the type of getting out that is done with a chronic illness is not always conducive to being that sociable. For me it is usually to get something from the shops. Or to socialize with family. I very rarely meet new people.
Again I think it is the emotional and psychological side or outcomes of being chronically ill that can be the worst to deal with. You can't take a tablet for feeling lonely as you can for pain. Yes, there are anti depressants but they don't stop you feeling like you're missing out. The easy solution that you would say to someone would be to just get out. Join a club. Go Salsa dancing as it were. But when you can't always guarantee that you can get out it's so difficult. Even talking at length can be tiring for many of us. There are many ME support groups but somehow I feel that you need something that is away from your illness. You want to be surrounded by people that understand the difficulties you face but not constantly be reminded that you are unwell. Such a catch 22.
One thing I will say is that I have met some wonderful people on Twitter that also have ME. It's nice to be able to talk to people that understand and give and recieve support. It has certainly been a lifeline. Perhaps I need to look into more things that I could do. When I'm feeling a bit more with it though and can do a bit more than blog, read and watch tv.
Thursday, 10 October 2013
Not sure why some of the dates of my posts are coming up earlier than they were actually published. Strange. Perhaps it's with using mobile app and it goes from the date I start writing a post? Anyhow, looking back on last week, when I was away in Kos I am made up with how well I did. Further proof that I do need to move abroad. Or more accurately to Kos. It is after all the island of Hippocrates.
Of course I was very weary of how much activity I could do and was being cautious. Afterall a 4 hour flight is a long time. If I'm honest probably too long. I was worried about it for a long time beforehand. As I have said before though I weighed it up with how well I knew the place and people and knew that it was a really relaxing place. Plus I probably would have been so upset not to have gone. But being wholly honest it was a long time. Probably too long. Especially when you're terrified of flying as well.
On the plane I was sat for the majority of the time sideways with my legs up on the seat. This was great for the legs but that night and the next day I had loads of pains in my side. This was due to leaning against the arm rest. Unfortunately the arm rest by the window doesn't lift up. I did try to cushion it with my coat but clearly it didn't do much cushioning. Before I went away I was taking approx 4 paracetemol and 4 tramadol a day but because of the increase in pain I was taking more. Luckily I was prepared for this. Sometimes with ME you really do prepare for the worst. You can often be pleasantly surprised then.
My mistake though was not taking a hot water bottle. Yes, I know that sounds ridiculous going to a hot country. Not usually top of the packing list alongside your bikinis. At home I live with a hot water bottle literally strapped to me. I find heat to be a great pain relief and comforter. But with going away somewhere hot I thought that the natural heat should be enough. But by the end of the day after the flight my sides were so sore and tender. I was cursing leaving my bottle at home. But now comes the part where knowing the people comes in very very handy. I asked the lady that owns the restaurant where we eat (right next door to our hotel, convenient but also scrummy) whether they had hot water bottles in Greece and whether you could get them in the giant supermarket. She went one better and went downstairs to were they live to get one for me. That is what I call customer service.
Furthermore on the excellent customer service front. To get into the inside part of the restaurant, where the toilets are, there is a single step. Any time I needed to go inside the owners or waiters would always come and help me up. Even when my Mum was there helping. One night the owner came out with a tape measure and measured the width of my chair and another ladies (she had MS). Why was this? Well because he wanted to build a ramp for us to get into the inside. Just wonderful, wonderful service. It really touched me. I hear that in Greece now all the new buildings do need to have easy disabled access. So they're catching up on the pc front. Unfortunately it didn't arrive until our last night but at least they have it now and what great customer service.
Whilst I am on the subject of the restaurant and to explain the title of this post, according to the scales I have put on a stone on holiday! I haven't noticed any changes in my body or clothes which is strange given what the scales say. Perhaps they are wrong. Not that I particularly want them to be wrong as the pre holiday figure was shockingly good. Anyhow I'm not upset by it. Why? Because it was fantastic to eat 3 meals a day for the whole week. Something that hasn't happened for quite some time. As I have said before this is majorly an issue with sleep. More apptly an erratic sleep pattern that often disturbs my eating times. However whilst I was away I got into a good routine. Usually it was similar to this:
8.45 wake up
10.00- 13.00 sunbathing, reading with naps after 20 minutes of reading
13.00- 14.00 lunch
14.00-16.00 inside nap
16.00- 17.30 sunbathing, reading, maybe a trip to the amazing duty free supermarket
17.30- 18.00 shower (sit down), get ready to go out
18.45- go out for dinner (in restaueant next door)
18.45- 22.00 dinner, talking
22.00 reading then sleep
Of course there was exceptions. A later night to celebrate my Dad's birthday. And and early night on the day when I managed to walk to the restaurant. Coinicedentally that was also the day that I woke up disorientated and accidentally took the amitriptiline that I usually take at night in the morning. Oopsie! I only realised I'd done this a few hours later too and only knew for sure by counting the doses that I had left. And generally just dependant on my fatigue and pain levels and trying to do what was best for me. But all very compatible to eating more healthily. Well maybe healthily might be pushing it a bit. Most mornings I had a croissant for my breakfast because it was the least fiddly and I didn't have to use a knife and fork to eat it. I felt a bit embarrased about needing to be fed in public. Drinking tea through a straw was odd enough to explain. My arms were more achey in the mornings so an easy breakfast was helpful and less painful. I love their Greek breakfasts (no not coffee and a cigarette!) Boiled eggs, toast and honey but that was far too much arm faffing.
I did enjoy some yummy desserts too, not for breakfast though. Although my sister told me off for having a chocolate and banana crepe for lunch. Hey I was on holiday and wasn't snacking during the day. I mentioned in my post on healthy eating that ice cream gave me stomach problems. Yet I don't have an overall dairy intolerance. I have found that some ice creams don't bother me though and that seems to be the case with Greek ice cream :-P haha. There were just so many yummy combos that I had to test my intolerances. Please note the 2 spoons in the photo too ;-). I am glad though that my stomach decided to behave. Always good when you don't have something else to contend with.
The only other contributor to my symptoms was the cold wind that we had for a few days and nights. In the day it was okay as the pool area was shelteted from the wind and was actually quite warm. You could sunbathe in your swimming costume. It was just as soon as you went up the hill to the street that you needed a fleece. See a coat might not have been much good for cushioning the armrest but useful against the bitter wind on our travels next door. This change in weather really effected my myalgia pains. I felt a bit like the tin man.
The colder days didn't really lend themselves to a dip in the pool. The pool is generally quite cold as it is anyway. However earlier on in the week I did manage to get into the pool. Not to swim mind. That would have been too much energy and no one wants to run out of energy in a swimming pool. So I got someone to put a lilo by the ladder then I sat down on the top of the ladder and pulled the lilo in front of me so that I could just flop onto it, keeping my legs in the water. Then to get out I somehow I managed to get out up the ladder with the lilo. Hard to explain, funny to watch.
The flight home was interesting. We got onto the plane in the lift using my wheelchair. On the van/ lift they had a small a wheelchair that is able to go down the aisle of the plane. I didn't use it though as I thought I would be okay with boarding the plane at the back, closer to the special assistance seats. This was true but unfortunately this time there was still a lot of people stowing bags etc. The plane was also fuller and there was people sitting in the special assistance rows. Luckily though me and my Mum did get an extra seat so that I could put my feet up. Otherwise I might have struggled more.
I was already quite scared before the flight. Ever since that bad turbulence in May I have been even more scared of flying. Again it's the lack of control and not seeing ahead I think. You'd think for someone with ME I'd be used to not to having control. But when that's also 35,000 feet up in the air it's fear upon fear.
Usually I'm not too bad on take off. I can look out of the window and enjoy the aerial view but this time as soon as the plane left the ground that was the last thing that I wanted to do. I felt like my head was going to explode and like their was a huge wait upon it. I also felt quite nauseous and hot. The take off was quite steep and at an angle too, so I don't think that helped. My instinct was to shut my eyes as I tried to take deep breaths but that just made things worse.I tried a technique I learnt when I was suffering from frequent panic attacks, which was to cup my hands over my mouth and nose and take a few deep breaths. This means that you are breathing in the carbon dioxide that you have exhaled and somehow slows down your breathing. I don't know the science behind it but it does help. Once we'd leveled out the pressure in my head disapated a bit but I didn't feel much better. I was having frequent hot spells too. I think I had used up most of my packet of face wipes by the time we landed to try and keep cool and help me feel better. I was tired and couldn't relax as much so I suffered quite a lot. I just wanted to burst out crying. Well really what I wanted was to be off the plane. The not so bad thing though was that I put my cushion from my wheelchair against the armrest, so no crazy pains in my sides.
So there we go. My time away. I'm so glad that I got to get away and also that I didn't suffer too much whilst there. It was lovely to relax, read and talk to lots of lovely people. It's nice to relax and enjoy being sociable everyday. I misd that back at home. And thank goodness for special assistance for making things even easier. I just wish I didn't have to fly to get there. I am going to work on putting some tips together for going away when you have a chronic illness. Any tips that anyone else has would be greatly recieved. And any tips for nervous flyers!