Expectations

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.

Spoons I need spoons!

Making appointments when you have a chronic illness can be difficult. It can be even more difficult keeping them. This is because our conditions are so unpredictable and we don't know from one moment to the next how we are going to be. This means that we often end up needing to cancel appointments, sometimes at the last minute. Even visits to the doctors, which I know sounds silly but sometimes although we need to go to the doctors there is just no way of us gettin there. If you have an understanding doctors then it's not too bad because they have more of an understnding of the condition.

Last week I was supposed to go to the dentist. I haven't been able to go for a while because I just haven't been up to it. But also because there is a set of stairs there that are really steep and there's just no way that I would have got up them. They do have a surgury downstairs though that each dentist takes in turn to do a surgury for people that cannot get up the stairs. So because these are only at certain times it was even more that I needed to book a specific time.. Whilst on holiday I chipped the cap off my front teeth, so there's yet anther reasn to go to the dentist. I have even made sure that I told them in advance that that needed doing so that I didn't have to make another appointment. 

However come the day of my appointment and I was in complete zombie mode. I should have known that I would not be going when I woke up and needed help to eat my breakfast as my arms were feeling very weak. After that I went straight back to sleep, into a deep sleep. About an hour before my appointment my Mum came in to help me. Or to try and help me! I just couldn't fully wake up at all. It was like when you've have had a general anastheatic and that moment just before you come round, when you can hear voices and are roughly aware of the mask on your face etc but you are still under the influence of the anastheatic. That is kind of what I was like. I managed to sit up and my Mum got me dressed but I couldn't do anything to help. I was like a rag doll as I get flopping and I couldn't keep my eyes open. I was falling asleep sitting up as my Mum was trying to wake me. She was shaking me and shouting at me. I'm surprised she didn't go and get a bucket of water to throw on me. But it wasn't working. I could vaguely hear her shouting and shaking me but I just couldn't do anything about it. My eye just wouldn't open, or when they did they would soon be closed again. I don't know how my Mum managed to get me dressed. I'm just glad that she realised that there was no way that I was going to get down the stairs. I probably would have two broken legs by now. At least it happened when  I was on my bed. Not in a supermarket as has happened a few times. Not that my Mum was trying to get me dressed in a supermarket of course. There were just no spoons at my disposal. When I came round I was confused that I was fully dressed.

So obviously we've had to make another appointment. Fingers crossed I will actually get there. In other news though I have actually managed to get out of the house three days in row, which has been unheard of other than on holiday. I've done nothing wild, just an outing round a few shops as my Mum wanted to take a jumper back and I arranged to see a friend that was up visiting her Mum this weekend with her son that has just turned one so I needed to go get a present for him. Whilst out in the shops I made the most of it and been super organized and bought some Christmas presents. I know it's early and usually I dispair of seeing Christmas decorations/ gifts before Halloween but I am makin the most of being able to get out as the earlier episode shows you never know when you are not going to be able to get out. So it's best to be prepared. Of course when you don't have to be somewhere by a certain time and can go 'when you're ready' it is easier but as ever nothing is guaranteed.  

I'm feeling realy grateful that I've been able to get out. It's been a bit of a shock to be honest. A nice one though and of course I've needed my trusty steed with me. Now though I'm just planning on resting up properly for a few days. Don't want to push the apple cart too much.

Some useful tips for shopping for food with a chronic illness

As you can tell by the new look I have been doing work on the site. I have now added a page too for all my useful tips. In doing so however I discovered that one of my posts about shopping for food along with some useful tips seems to have vanished into cyber space. Or I accidentley deleted it, which is probably quite likely. Luckily I had written most of the post in my notebook so I can bring it to you now, again.

Food shopping is an activity that requires a lot of effort and is an area where many sufferers of a chronic illness, dissabilty, the elderly, people with an injury and sometimes pregnancy require help. Especially if they live alone. Again this is where I am lucky to live with my parents. Food shopping when you break it down into elements is actually a convoluted process that requires mental, physical and sometimes emotional (oh no they've ran out of my favourite biscuits) effort. In other terms it requires a lot of spoons. Think about it. Firstly you need to get there. When you do you could possibly take ages looking for a parking space, that could leave a longer walk to the supermarket. Once inside you push a stubborn trolley around whilst negotiating old age pensioners, errant small children, staff packing shelves and us annoying folks in wheelchairs (sorry). Then there is the physicality of bending, stretching, reaching, lifting and twisting to put items into your trolley or basket. As you progress through the supermarket your trolley or basket becomes heavier making it more difficult to push or carry. Then when you get to the checkout you have to take all your items out, then put them into bags, then back in the trolley if you are using one. Walk back to your car. Remembering where you parked and lifting everything once more into your boot. Going home. Getting the shopping out of the car. Unpacking the items and putting them away. It makes me tires just writing that (twice now!) and thinking about it. It is a task that requires a lot of effort and one that can tire out the healthy amongst us.

So for anyone with a chronic illness it's certainly like climbing Mount Everest ten consecutive times. Therefore it is definitely an area where sufferers require help if needed or wanted. Your GP should be able to advise you on any services that are available in your area to help people that have difficulty in accessing food, as well as your local council. The most common service being meals on wheels. Below I have quoted some information about the Royal Voluntary Services meals on wheels scheme. Their website can be found here.

   'The Royal Voluntary Service is the original meals on wheels provider. We deliver two million meals a year to people who have difficulty with shopping, carrying food home or cooking for themselves.'

   'Today the service could be more accurately described as 'meals with care.' Our drivers are instructed to ensure that the older person is safe, well and secure.'

   'Our home delivered meals service provides friendly social contact for those who may be confined to the house.'

   'In some cases, once the driver has delivered a frozen meal one of our volunteers will come over and heat the meal up for the older person and stay to keep them company.'

Other useful websites for frozen meal delivery services are:
www.wiltshirefarmfoods.com
www.oakhousefoods.co.uk

Below I have made a list of tips to help sufferers of a chronic illness, their carers or anyone that had difficulties shopping for food.

* Is there someone that could go shopping for you? A neighbour, relative or friend

* Can someone take you to the shops? Or could you get a taxi?

* Internet shopping- If possible time the delivery so that someone can be there to help you to unpack and put away the items.

* Find out what assistance the supermarket has? Mobility scooters, wheelchairs, trolleys for wheelchairs, disabled parking bays, toilets

* If you use a mobility scooter or a wheelchair is there someone that can help you get things off high or low shelves or from freezers for you?

* Speaking of freezers, make sure you wear layers whilst shopping so that you don't become to cold and burn more energy as your body tries to keep warm.

* Always go to the same shop, where you know the layout and the staff, that way you know where everything is and you won't waste energy by searching for the things that you need.

* Always write a shopping list beforehand so that you remember what you need to get. This will save energy if brain fog hits and you are wandering aimlessly trying to remember what you needed to get and may save you another visit.

* Does the supermarket have a cafe? You may wish to do your shopping in stages rather than one big push. A rest and a drink or healthy snack may help you.

* Weigh up whether you are best doing a big shop less frequently or smaller shops more often? Which suits your energy and stamina levels best.

* Trolleys tend to be better than baskets because they distribute the weight better, even if only have a few items.  Using a higher trolley will also prevent you from needing to bend as far.

I hope you have found these tips useful, If anyone has anymore then please comment below. I will add these tips along with the ones on cooking and preparing food on a page so that they are easy to find for future reference.

Post holiday blues

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.

Making up for being able to eat ice cream

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

9.30 breakfast

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!