Catch up

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.

Happy Birthday to me!

He he I can't get Stevie Wonder out my head, but it's ok he can stay there. Today is a double celebration, not only is it my birthday but I'm also celebrating smashing 3000 views on my blog. Wooo!! This makes me so incredibley happy. This is just a very quick post, because I'm supposed to be resting to be able to go out later, to say that I have decided to donate some of my birthday money to the canary in a coal mine project. It's a project that is filming people all over the world with M.E and the aim is to raise the visbility of M.E. To try and enable more sufferers to be understood. To be able to say to someone I have myalgic encephalomyelitis and they might have some idea what you're talking about. Here is a link to their youtube page with all the details: http://m.youtube.com/index?&desktop_uri=%2F#/playlist?list=PLSX_kPpxAZX7uKr0d_gkQgs93Rg93xD3s

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.

Some useful tips for travelling with a chronic illness: travel insurance

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Travel insurance

First 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.

Some useful tips for travelling with a chronic illness: Planning

Following on from my last post about research, today's post is all about planning for your holiday. One thing that I want to say beforehand though is that you think carefully about who you chose to go on holiday with. You will need to be with people that understand that even though you are on holiday it still does not necessarily mean that you will be able to do much. People that understand that your symptoms may flare at first with the change in activity or climate and that they may need to help you even more. You need to feel confident that you are not stopping those you are holidaying with from having a good time but that they understand that for you, you are going away to relax. So just be wary of any conflict in interests. Basically you need to feel comfortable with the people you are holidaying with caring for you. Think about what you are like on your worst day. Who would you have no qualms about helping you then? As I have mentioned, I was supposed to go away to Turkey with friends this year, but the worse my condition was getting the more I realised that I wouldn't feel comfortable with them needing to care for me. Washing my hair, or even helping me off the toilet if needed. If you all just want to get away and completely relax and enjoy some quiet time, then that's a good start. I personally find that although my parents or sister still need to care for me while we're away, that's just par for the course, that at least on holiday they are partly getting cared for too. Not having to cook and clean, or work.

 Once you have researched and booked a holiday that you feel confident and comfortable with and let's not forget excited about, then it's time to start planning. As ever with chronic conditions the rule is DO NOT DO IT ALL AT ONCE. Chances are that you have not booked a last minute holiday, as some of you know leaving the house with a chronc illness can require a lot of planning. However as soon as you book, and possibly before, you will start to get ideas about the types of things that you will need to take and all the things that you need to do beforehand. So below I have come up with some tips to help you prepare for your holiday.

* Make a check list of all the things that need to be done before you go away. 

  

- arrange travel insurance and inform them of my condition

- book special assistance through the airline

- order any foreign currency

- make sure that I have enough medication for my holiday. Order more if necessary.

- make a list of all the things that I need to purchase for my holidays

- make a list of all the things that I will need to pack, sort into a list for hold luggage and hand luggage

- familiarise yourself with the airlines luggage allowances, how much weight that you are allowed or the size of hand luggage.

* Writing lists will help you if you suffer from brain fog and to help you feel confident that you have everything that you need.

* If you need to purchase anything for your holiday, get them while you can or use internet shopping.

* On your list of things that you need to take remember to include anything that you use at home to help you cope with your symptoms. For example vitamins, supplements, tens machine, hot water bottle, aromatherapy oils. The more things that you have to help you cope the better.

* Aim to leave the week before you go away as free as possible, to help you reserve energy. Meaning all the things on the checklist should be completed by then. This also means keeping any social visits etc to a minimum. It also may mean that someone else packs your things.

For most of the points on the checklist above I have more information and will post them soon. I'm feeling in need of a holiday now. 

Some helpful tips for travelling with a chronic illness: Research

Having a chronic illness can be incredibly isolating and it can often feel as though you are not able to lead a normal life. Just visiting family and friends or going to the shops is difficult enough. So it can seem impossible to get away on holiday, in your home country and abroad. Since I have been ill I have managed to get away abroad a few times. This year I thought that there was no way I'd get away due to my condition worsening but I'm very grateful that I did so. You can read about my experiences here, here and here. Whilst away on holiday I was speaking to a woman that had MS, her and her husband try to get away abroad as much as possible. They said that it is important for their wellbeing. I really admired their can do attitude.

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.

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.