Wednesday 20 April 2016

Goals

When people have an illness or injury they often set goals for when they would like to recover by. I have always been confused when people who have M.E. try and do this. It's all very well and good saying that you are going to be able to walk a mile by the end of July, but that isn't going to make it happen. Everyone's case of M.E. is different, and some are able to increase their activity by a little each week, but in my experience this is very rare. As I said in my last blog post, most people with M.E. who see improvements get them from resting. I am generally on bed rest all of the time, and thanks to that occasionally my body will give me enough energy to go outside and have a coffee or something. My point is that the body decides when it is ready, you can't make it be ready if it isn't otherwise. The illness is very much out of our control, and for me one of the biggest steps to enjoying life with M.E. has been to accept that. 

So my goals are not based on recovery (which of course I would still like to do!) they are acceptance, contentment, purposefulness, kindness and joy. These are things which I believe can be achieved without my health improving. If achieved they will give me quality of life, and after all isn't that what we all want! They cannot be attained overnight, and must be worked on to be maintained. Sometimes emotional intelligence can be hard to find, which makes these things even more difficult to find.

In order to achieve my goals there are a few things which I try to do. I spoke about some of these in a previous blog post, so won't go into too much detail here. They are self care, mindfulness, volunteering for charities, forgiveness, removing anything which makes me feel bad about myself (especially on social media) and focusing building other people up.

These pictures to me all represent ways in which I am trying to achieve and maintain my goals!

What are your goals in life? Do you place value on outward or inward goals? Do you have any tips for living well?

Friday 15 April 2016

How I would explain M.E.

For the majority of the time that I have had M.E. I have been unable to explain it to people, this is partly because it is almost never explained to M.E. patients and because of brainfog. Sometimes you have to hear someone explain something to you before you can verbalise it, even if you have been living with it for 8 years! As far I as I can remember this has never happened to me. Once I had a doctor explain M.E. to me in a way which made sense but I was very brainfoggd at the time and can hardly remember it. Over the years I have gradually gained an understanding of my disease. Recently it hit me in the clearest way, which I will try and explain to you.

M.E. involves many symptoms and behaves differently in everyone – but the basic rules are the same. Exertion and or exposure to stimulation/light/noise/sounds and chemicals can cause an adverse response resulting predominantly in fatigue, brainfog and pain, other debilitating symptoms are often present too. In order to reduce the symptoms the person must have complete rest with all stimulation removed. The bodies of people with M.E. are highly sensitive to their surroundings so having the correct temperature, sound, light, adequate food and water are important. Other factors which may affect somebody with M.E. are mould, cleaning products, sensitivity to certain smells, allergies to animal hair, dust, chemicals and pollen etc.

This is where it gets difficult, some people find that their health improves under these conditions, others find it necessary to prevent further symptoms, but cannot gain improvements. Sometimes M.E. seems to get worse or better out of the blue, and that cannot be explained. Research is beginning to show that there are different types of M.E. It is thought some groups respond better to total rest than others. I will only be writing about the type which responds well to rest, as this is how my M.E. has behaved so far.


In a nut shell, a normal person gains stamina from working hard and training, but a person with M.E. gains stamina from rest. Pushing through will only result in fatigue and an increase in other symptoms. It is a lot more complicated to carry this out in practice, in reality people with M.E. must do things to keep themselves occupied and content. Finding the right balance between resting and activity is the eternal struggle of an M.E. patient!

It can take many years to gain progress from regular periods of total rest. In the past it has taken me yeas to get from almost bedbound to playing badminton once a week and walking 3 miles a day. Unfortunately I threw it all away by deciding to go to university and doing a little too much each day until I relapsed, now I spend the majority of my time in bed, working back up from scratch again. I sincerely hope that my body responds as well to rest as it did the last time around. It is never guaranteed that it will behave the same way years later.

Is there anything that you would like to add? I know that I have left a lot of details out. How would you explain M.E?

Saturday 9 April 2016

An interview on Faye's blog, and what I would say to someone who has recently fallen ill.

A few weeks ago I was asked by the wonderful Faye from Bed BearHugs and Beyond if I would do an interview for a series which she is running on her blog. The series is all about people who she finds inspiring, and I was so honoured to be asked. I have looked up to Faye for quite a while now. She was one if the first readers of my blog, and has continued to be nothing but encouraging ever since. In the time that I have known her, Faye has set up the successful business BearHugs which sells gift boxes for every occasion. Because she endeavours to give back to the community wherever possible, Faye gives one in every 50 boxes to a child with a serious illness through the charity Post Pals. Faye also sells jewellery with 100% of the profit going to the ME Association, you can see her jewellery here if you are interested. Faye always tries to brighten the lives of others with chronic illnesses, either by going out of her way to write an especially thoughtful message, or by encouraging people through her blog. All this she does whilst suffering with a chronic illness. Faye is most definitely an inspirational person!

You can read my interview on her blog here and please do check out some of her links above, Faye is doing a lot of good things!



One of the questions in the interview was "what would your advice be to someone who has recently fallen ill?" I found that I had a lot to say in this topic and didn't want to make my interview answers too long, so I have decided to go into more detail here. Aside from what I have already said in the interview I would say.

Find a way to address your diagnosis and express yourself. Whatever level of severity, once you have an illness it becomes a part of your life. Before someone is ill they may have distinct areas of their life, work, family, friends, hobbies etc now you have another area to deal with too. All other sections get addressed when you do them e.g. work when you are at work etc but there won't be an allocated time to deal with your illness unless you make one. Some people have regular appointments with a specialist which will address this issue, but if you don't have this option you will need to find your own time to reflect. For me this is blogging and social media, for others it may be journalling, attending a support group, engaging with online forums, or talking things through with a counsellor. We really need to express ourselves to work through times of change. and it is good to set aside time to address the practicalities of living with a chronic illness. It will enable you to work out the solutions to illness related problems, and come to terms with your illness.

Accept aids e.g. walking sticks extra help etc, they are there to improve your life the fact that you use them doesn't make your illness any more severe, make the most of what you have and adapt. You can still live with fun in your heart.

Treat yourself, you have something negative in your life, offset it by doing something good for yourself. A subscription to a service, or any kind of regular treat will give you a boost. Self care is an important part of living well with a chronic illness.

Get online and actively try to find out more about your illness, online communities are great for giving advice on coping techniques and are a great source of support. Often there will be a lot of anecdotal advice offered which is not given out by doctors. Doctors can only give advice which is pre-approved. Don't underestimate the combined wisdom of a community of people living with the same illness or disability as you. Areas which an online community may be able to help you with include, adaptive aids, finance, alternative medicines, dietary advise or gentle activities which you can do... you don't know what you might find online!

Don't compare yourself to other people, even if they have the same chronic illness as you, everyone's health affects them differently and just because one person is able to do something doesn't mean that you will be able to do it too.

If your chronic illness gives you a lot of downtime try and find ways to make your time purposeful and rewarding. I really enjoy crafting for various charities. It is a good use of my time, and I like the fact that I am able to give back in a small way! It is really good for our wellbeing to have ongoing projects and to keep busy. I like the fact that volunteering allows me to be part of something bigger than myself, and I always have something to do. Another volunteering idea could be campaigning for a charity which supports your illness, there are usually several different ways to get involved. Do make sure that you don't over do it though, these are just ways to use surplus energy. On the whole resting is the best thing to do!

Do you have anything that you would say to someone who has fallen ill with a chronic illness?

Monday 4 April 2016

My sister is running a half marathon for M.E. Research UK

During M.E. Awareness Week last year my sister began thinking about ways which she could raise money for M.E. research. She began to think about possibly running an event, but as she is not a runner it seemed like a really out there idea. She began running regularly to test the water, and by July had decided that she was going to run a half marathon! Since then a training schedule has been implemented, and she has been training hard. She has decided to run the Southampton half marathon, as this is where she is at university, now the date of the run is less than 3 weeks away and she is ready for the challenge!

Melanie has decided to run for ME Research UK because she would like all of the money raised to go towards developing a better understanding of the disease, which will hopefully lead to a cure one day. This will be my family’s main fundraiser for M.E. awareness week this year, which is the 11th-17th of May!


If you would like to read Melanie’s own words on why she is doing the run see her fundraising page here. Any donations will be much appreciated.

M.E. is an illness which is not yet scientifically understood, there is currently no affective treatment available and the disease is highly stigmatised.  For these things to change we need research, we have hope that change is possible, but we need your help.

Do you have any plans for M.E. awareness week or month?  Let me know what you are up to and I will help if I can!