It's not always ME

I have seen many a tweet or post from people with M.E and other chronic illnesses about doctors lack of understanding and 'horror stories' about appointments and hospital visits. And I'll be honest, for a while I gave these posts too much head space. I started to believe that I simply must suffer in silence and accept that my health was getting worse and that no one could do anything.

Until one day when even breathing felt like too much hard work I declared that this was madness. Because if someone that was otherwise healthy felt half this bad they'd be calling an ambulance or at the very least seeing their GP. Yet because I have a chronic illness and think I know what is going on I simply have to put up with it and keep quiet. Well I wasn't having that! It occurred to me how ridiculous it was to be suffering so much yet my GP obviously had no idea how bad things had got. And if I didn't tell them, how could they know? 

What was more ridiculous is the fact that I've always had good experiences with my GP's, they diagnosed me early, have made referrals to OT, home visits and helped me find a good balance of medication. I've not had the bad experiences others write about and fear will happen again.

The thing is though regardless of your medical history we all need medical attention from time to time. Whether it's to simply review medication or make referrals because our illness is becoming more severe. We cannot do what I've actually seen some suggest in keeping clear of doctors. This is not to say we should accept poor treatment. Far from it. There are good doctors out there that do understand M.E, it's a matter of finding them. They're the ones we should be taking advice from, not some naysayers on the internet. It must be so hard on them too, to see so many patients asking for help but the science and research is so far not progressive enough to help them. When all they can do is help keep us 'comfortable,' try to manage our symptoms and rule out other things.

Because that is another reason why seeking medical attention can be so important.  Sometimes it's not going to be 'just M.E' 'just fibromyalgia' or 'just IBS', etc etc. I think many people avoid getting help because they feel they'll be told it's just (insert known diagnosis). To be fair in some cases it will be. Or you will be sent for some standard blood tests or an ECG etc only for them to come back 'normal'. It can be disheartening, believe me I know how it feels, especially when you feel so far from normal. You just want answers. Or something with a quick/easy fix.

However, when it comes down to it this is also the best we can hope for. We already know we have that condition and probably have built up a wealth of knowledge and coping mechanisms to help. We also know recovery is an ongoing process filled with peaks and troughs. Having recently been on the other side, where test results came completely out the blue and needed looking into urgently, I can tell you being on that side of the fence is certainly not the better option. So my opinion on negative results has certainly become more 'phew what a relief.' Hopefully, I'm doing okay though.

Sometimes we might even get some answers that can be more easily solved, our iron or vitamin D levels might have dropped, which can be fairly common if we are housebound and not getting all the nutrients we need for whatever reason. So a short course of them can help us get back on track.

Then of course, like I said there are the times when it's not going to be just M.E etc. And obviously we can't know this until it's confirmed. But what I feel it's important to say is, we are not immune to other illnesses, chronic or short term. From common coexisting conditions such as many M.E sufferers also being diagnosed with fibromyalgia or POTS to infections, lumps and bumps and even mental health problems. Or heaven forbid breaking a bone or muscle damage, which when you think about how drained and weak we can be could easily be a possibility after a fall.

Which is why I totally rolled my eyes when I saw a post about the junior doctors strike making no difference to those of us with M.E because the NHS can't do anything for us. If only having M.E made us exempt from accidents or other illnesses. Sadly it doesn't. Of course in those situations we cannot always guarantee we will see a doctor or nurse that will also understand M.E or other condition, but in those instances we just have to remember that we know better and we're there for another reason.

This is why it's so important to be self aware and know what is normal for you. And that includes self examination of your bits and bobs too. I have a blog post explaining how to do this for women here and for men here. I think as long term sufferers we're pretty good at being self aware, because we are constantly self evaluating and assessing. Judging how many spoons we might have. Do we have enough to have a shower? Knowing when we need to stop and rest. The effects of PEM on your body and how it will differ from activity to activity. The difference between PEM and a relapse. The difference between a flare in M.E symptoms or a flare in fibromyalgia symptoms. You become an expert in you.

However of course there are going to be times when things feel brand new and out of the ordinary. Symptoms you may never have experienced. Symptoms that scare you, such as paralysis or feeling completely trapped in your body unable to communicate. And when you are treading that line between is this just another M.E etc symptom or something else, isn't it best to be on the safe side? Wouldn't you rather know for sure that it's nothing else on top of everything else?

Not long ago after I had been in a neurological hospital for a week I began to experience a dragging sensation in my face and my speech began to slur with it. It was something I've never experienced before and with this being a key symptom of a stroke you can bet I was spooked. And so even though I was struggling with PEM, I knew I had to get it checked out. Luckily it wasn't a stroke and thank goodness for that. It turns out it was a new PEM symptom, a reaction (or overreaction) of my diva body to having been in hospital for a week and only getting 10 hours sleep in that time, when usually that's what it needs a day. Did I feel better for knowing I wasn't having a stroke? Yes, of course. Did my doctor feel I'd wasted their time? No, they were concerned too and checked me over and spent ages on the phone to my team at the neurology hospital.

Sometimes, even though we're self aware we can also not pick up on some things because we're also so used to being in pain or other symptoms. These might mask other things that might be going on. I know someone that didn't pick up on a kidney infection until they almost got sepsis, which sadly could have been fatal, because back pain and fevers were common when they were flaring.

So my point with this blog post is, be vigilant with your health. Know what's normal for you and what isn't. And if you think something is amiss find out for sure. I know it's hard when you already feel so awful but you need to be safe. Find a good doctor and never think that you have to put up with bad treatment or poor opinion. Move on from them and block out their unhelpful comments. You know yourself and you know you are far from a lazy malingerer or hypochondriac. Because you really do need someone in your corner. I disagree that we do not need them because we all need medical care, whether it is for our chronic illness or for anything else that might come your way. Remember we can't get help if we don't at least ask. Don't suffer in silence. This is all part of treating yourself with love and respect, of wanting the best for yourself.

If anyone knows of a good resource for finding an understanding GP or medical professional please do share.

Take care everyone

Siân
X

Make way, make way for Team Princess 2016

We're back!! And ready (as we can be) to take on M.E awareness day 2016 (Thursday May 12th) and build on the amazing achievements of the past two years. Team Princess have raised over £10,000 for M.E charities in the UK and Australia through our The Princesses and M.E events. That has gone towards funding biomedical research, drug trials and all the great services these charities offer to help support sufferers and their families. As well as helped to raise awareness for this much misunderstood illness.

Firstly who are Team Princess and what is The Princesses and M.E event?

Team Princess are a group of M.E sufferers and supporters that become Princesses for the day on M.E awareness day to raise awareness and fundraise for M.E charities. Individually each Princess is admirable, courageous, strong and brave. Even though they might not think so themselves. Facing adversity with optimism. As a group we're a sisterhood (including the men) that want the best for one another. Getting each other through the worst days and cheering for them on their achievements.

The Princesses and M.E event is held on May 12th, where members of Team Princess become Princesses and share photos to social media using the hashtags #teamprincess and #theprincessesandME. All in the name of raising awareness and raising money to help give sufferers support and hope. More details on how you can take part this year are below.

When I first had the idea I wanted to not only fundraise and raise awareness but also celebrate some of the fantastic people that I had got to know that shared a diagnosis and soon became friends. People who left me in awe of their determination, their strength, positivity in the face of adversity and their kindness. They were princesses in my eyes.

But I think the word Princess can conjure up images of diva strops (that's the illness not us), of being delicate, fragile and girly. That they are helpless and in need of rescuing, whisked off into the sunset to live a fairytale life. Yes at times we are helpless and feel no one can offer any genuine help, until rescue comes in the shape of a cure or at least effective treatment that allows us to regain a life we can only dream of. But what I see is far from fragile, helpless and hope-less, I see strong people facing adversity with courage and even humour. They're the kind of people that you want to learn from and get to know more. They're Princesses.

This year we want to ensure that that message doesn't get lost. That people don't just look at the photos and think "oh how pretty you look as a Princess." But see the reasons why you are a Princess and that for all you cope with you more than deserve to be a Princess for a day.

So on Thursday May 12th if you wish to join Team Princess and our The Princesses and M.E event what you need to do is:

1) Get in touch and let us know you'd like to take part. Either comment here, Facebook, Twitter or Instagram. Links to which are at the end of this post.

2) Set up a justgiving or btmydonate if you wish to set up an individual fundraising page. This is not compulsory and because many sufferers are too unwell to set up their own fundraising pages and keep up with them group fundraising pages for a number of charities have already been set up, to make things even easier should you wish to help Team Princess' fundraising campaign. You can simply share the links,(please note not all event pages for btmydonate have been set up yet but will be added as soon as possible). Here are the links (simply click on the page to go to the page):

Justgivng
Justgiving Team Page
Association for Young People with M.E
Action for ME
ME Association
Invest in ME
ReMEmber
ME Research UK

BT mydonate
Smile for ME
Hope 4 ME and Fibro Northern Ireland
Tymes Trust

I've included more details about our fundraising campaign below. And a guide on how to set up an individual page is available here http://howtodealwithme.blogspot.com/2016/04/how-to-set-up-individual-fundraising.html

3) On May 12th dress up as a Princess. Dress up as much or as little as you like, or are able too. Over the years we have had full costumes, rewearing of wedding dresses, wearing a gorgeous dress you already have, Kate Middleton fashion inspiration, pyjama princesses or simply wearing a crown/ tiara. And let's not forget our men in their full Princess attire. Remember to put your health first and if you are too unwell to dress up on that date then of course you can choose another date should you wish or prepare your photos in advance. The point is you're a Princess regardless of what you are wearing. It's not a competition. Even if you simply use an app on your phone like snapchat or pic collage to add a crown it will still help make a difference. And any men that wish to take part but don't want to dress up as a Princess then being a Prince is great too.

4) On Thursday May 12th (or another date if you are too unwell) share a photo of yourself as a Princess to social media and use the hashtags #teamprincess and #theprincessesandme Be sure to post to our Facebook page too.

3) Alongside your photos write: "Today is M.E awareness day and to help raise awareness I've joined Team Princess. I'm a Princess because..."

Post about the characteristics you share with well known Princesses. Who if you look beyond the girliness you'll find stories of bravery, courage and fighting for what they believe in. Qualities that show you're strength and even your sense of humour. Here are some examples:

I ride around in a carriage/ noble steed. Also known as my wheelchair.

I'm in search of a fairytale.

 I feel like I could sleep for 100 years.

Just like the Princess and the pea the slightest discomfort means a restless night.

Because I have help to do chores and put on my shoes. Sadly unlike Snow White and Cinderella the animals have not been very cooperative to training.

Like Ariel I can't walk on land and want to be where the people are.

Like Belle you want adventure in the big wide somewhere.

Because I have been locked away from the world but never gave up on hope that one day things will change.

I long for the day a fairy godmother will arrive and tell me there's a cure.

Like Cinders staying out past midnight leaves you worse for wear.

Brainfog means that just like Cinders we're likely to leave things behind.

One of the quotes you try to live by is 'have courage and be kind.'

Because I am brave and face the beast that is M.E each day. And just like Belle as each day passes I am learning to tame the beast and find the beauty that life still has to offer.

Being brave enough to try to change your fate like Merida.

You're a warrior, like Xena or Mulan, but battling against chronic illness.

Like Kate and Diana I champion a cause and campaign for change.

5) End your post with: "Myself and thousands more are desperately hoping for a fairytale, for a magic potion that will help treat and cure this villain of an illness. You can help us achieve that by helping us raise awareness and donating at..."

5) Link to either the teams fundraising pages or your own fundraising page.

And that's all you need to do to be a member of Team Princess. We'll be sure to share your photos across our social media too, to help raise awareness and ensure they reach as wide an audience as possible. If you don't want your photo on a certain social media then please let us know.

Once again this year we want to support the cause as a whole which means supporting and helping as many M.E charities as possible. Here in the UK fundraising pages are set up on justgiving for Action for ME, Invest in ME, ME Association, Association for Young People with ME, reMEmber, ME Research UK and on btmydonate for Smile for ME, Hope 4 ME and Fibro Northern Ireland and Tymes Trust. These will be group pages and be open from April 12th.

 You are also welcome to set up your own fundraising page, should you wish to do so, which can be linked to the overall team page on justgiving so that we can keep track of our overall total. Having your own page will be best if you plan to sell or giveaway items in return for donations. If you plan to do this or hold an auction please let us know in advance as there are rules and regulations that need to be put in place which you will need to be made aware of before setting up your page. Also please note that no online raffles can be held due to licencing laws.

 Princesses that wish to set up their own fundraising pages are free to choose which charity they would like to support. We also ask that you respect individual members of Team Princess' choice of charity if they decide to set up a personal fundraising page and understand that their decision is based on their personal experience with that charity and the way they have helped them to cope with their diagnosis. However by being a member of Team Princess you are also supporting the cause as a whole, promoting unity and wanting to help as many charities that do so much for us.

Princesses in other countries that wish to take part please get in touch and we can look into how we can help charities in your country too. We'd love to reach as many charities as possible to help sufferers worldwide.

We'll also be supporting a lovely organization ran by an M.E sufferer called Spoonie Survival Kits, which sends survival kits to help brighten a sufferer in needs day. Money will be raised for these through auctioning an item for each charity/ organization, which will be held on our Facebook page www.facebook.com/MEprincesses. Dates for this auction are still to be confirmed.

As recently announced Amanda Carroll's beautiful paintings, as seen above, will also be auctioned on our Facebook page on the weekend of 21/22 of May. Amanda wishes to raise money for the ME Association. Full terms and conditions for the auction will be available to view on our Facebook page.

But wait there is even more information and plans! In the spirit of wanting to create a postive atmosphere and celebrate the kind, generous pillars of strength many sufferers are, the ones we see as real princesses who help get us through the worst days, throughout May we're going to be holding giveaways. Where each week you will be able to nominate a friend(s) (that has M.E) that you think is a Princess and share the love by stating the reasons why you think they're such a good friend/ princess. Each nomination will then be entered into a draw to decide the winner.

There will be four giveaways in total; one on our facebook page, one on instagram, one that is eligible for international (outside the UK) entries and one in which we celebrate our wonderful carers who take so much care of us. The first giveaway, which will be on our facebook page, will start on Wednesday April 27th and they'll be drawn every Wednesday. The rules for each giveaway will be clearly stated with each giveaway announcement. It's so exciting to think about making people feel special and to be giving away prizes that will help brighten someones day.

Finally watch out for our promotional posters and please retweet/ repost/ share them to help spread our message and raise as much awareness as possible.

On our social media accounts we'll also be trying to create a positive space. M.E awareness week can be quite tough for sufferers. As much as it's amazing to see M.E being mentioned so much and people using what limited energy they have to help raise awareness, it can also hard to see so many posts on your social media feeds. It can be very in your face, a stark reminder of reality and all the adversity; that life has not gone to plan. Because as sufferers we know full well the suffering and devastation this illness can cause. It's almost like rubbing salt in the wound. As mentioned it's difficult because awareness needs to happen to reach people outside of the community but if you are in that community it can stir up a plethora of emotions. So we want to create a little bit of a sanctuary. A place you can reflect on personal achievements and strengths. How you've learned to keep a smile on your face. And a place to celebrate others achievements and give them the support and kindness they need.

We're very excited about this years campaign and cannot wait to see how much of an impact we can make this year. 

Keep up to date with all things Princess on our social media:

Facebook: www.facebook.com/meprincesses

Twitter: @teamprincess4ME

Instagram: @teamprincessofficial

Thank you for reading, and taking the time to learn more about Team Princess.

Queenie
xx

Spoonie Travel Interview with Lisa

Illness/ disability: ME

Destination: Cala Galdana, Menorca

Who did you travel with?

 My husband, Stuart

What airline did you use?

 Easyjet. We book a package deal with them on easyjetholidays

First of all, how was your holiday?

It was brill! I was so happy to have been able to travel and enjoy some decent sunshine and be by the sea.

What was your biggest worry before travelling and how did you overcome it/ justify it?

The biggest thing for me was worrying that the travelling would exhaust me and that I would then spend the whole 10 days in bed trying to recover and wishing I hadn’t tried to attempt the trip. For years going abroad hasn’t been an option as getting out the house for any reason was such a struggle. However, in the last six months I have been more resilient and as I love travelling and have missed it so much, it seemed time to take the chance. Reading other spoonies accounts of coping with travelling gave me a lot of confidence to go for it. 

Did you have to make any special arrangements for transfer from the airport to the hotel because you were in a wheelchair? 

 We made sure that we told Easyjet before we travelled that I had a wheelchair and they were excellent giving me assistance from the moment we got to Gatwick right to the hotel in Menorca. I was really surprised at how considerate everyone was and willing to help.

Did you notice any changes in your health whilst away? Good or bad? Any new symptoms? I didn’t have any new symptoms and was amazed at how well I coped. We quickly got into a routine that I could manage of late breakfast, rest after breakfast and then afternoon by the pool or on the beach. I only had one day when I couldn’t manage that. I used the wheelchair to get around the hotel for the first 6 days but after that was feeling stronger and was able to get around without it which was fab. The holiday was so restful I think it helped me get some strength that I didn’t have before. 

How was Cala Galdana as a resort/ destination in relation to your illness/ disability? (Access, flat, close to restaurants etc, quiet)

We stayed at the Melia hotel. I had spent a lot of time researching somewhere that sounded as if it would be suitable and manageable for me. The hotel wasn’t too big although it still had a choice of restaurants. The smaller restaurant was lovely and quiet. The hotel was right on the beach and had lifts so it was all very accessible for me. There were some steps from the bottom floor down to the beach but I could manage those. There weren’t steps in the hotel itself so it was very easy to use the wheelchair. 

How did you find attitudes/perceptions towards you by other travellers and from the locals?

Everyone was so friendly and considerate. It does worry me as it what people think when sometimes I use the wheelchair and then other days don’t. However, I quickly realised people probably don’t notice and I can’t tell what they are thinking anyway so I stopped worrying about it. I always feel like I am like a toddler with a pushchair – I can walk but I just get exhausted so it’s an energy saving device.

From your experience what piece(s) of advise would you pass on the other spoonie/ disabled travellers?

 I think be realistic about what you can manage and plan the trip to give yourself the best chance of coping. We wanted to make sure we flew from Gatwick as we felt it would be more manageable than tackling Heathrow, plus to have afternoon flights. I don’t cope with mornings so we made sure I would be at my best when heading off. I think this really helped me. Turning hassles like packing into a little fun project of planning outfits and just laying out a few things each day so it was manageable. Plus I made sure not to do any social activities at all for the two weeks leading up to the trip. I think lastly, just trust and have faith that you will be ok. It is daunting going somewhere different but tap into those feelings of being courageous and adventurous to keep those nagging concerns at bay.

Do you think that despite all the extra 'hassles' of travelling as a chronically ill person it is still worth it?

Absolutely if you are strong enough. I know it isn’t appropriate for everyone. However, I found being somewhere completely different really freshened me up mentally and it feels like a real achievement to have experienced somewhere different even if I wasn’t able to go hiking around the island and diving off boats.

What items would you not travel without?

 My ipod. I love just sitting back, watching the sea and listening to music. I also have lots of audio books loaded on it as I find reading tiring.

What other disability/ illness essentials do you pack?

 Noise cancelling earphones. These were great on the flight and waiting at the airport. I could block out the rest of the world and just sit back with a nice relaxing playlist.

What are your favourite holiday beauty products?

I like having a skin moisturiser. At the moment my one of choice is The Body Shop Vitamin E one which doesn’t smell too strong and is easy to rub in.

If you were to go on holiday again what would you do differently?

I don’t think anything. I am just glad that the research paid off and the destination was somewhere that felt like a pleasure and not a drain.

How are you after the holiday?

I have been good. I am very happy to say that even with the travelling home, I came back feeling stronger than I went.

Did your experience make you want to travel again? If yes where would you like to go?

Definitely, I would love to do more package beach holidays that are just all about soaking up the sun and sand. I would love to go to Mauritius or somewhere exotic – as soon as I feel I can manage the longer flight.

A big thank you to Lisa for taking part in this spoonie travel interview. I hope her positive experience and advise has been useful to anyone thinking of travelling in the future. Or she has given you some inspiration of where to travel to. From the photo (below) and Lisa's account Cala Galdana looks and sounds idyllic. For more inspiration and tips you can read all my trave tips from researching to reaching your destination on my travel tips page, click on the link or you can find it on the right of my home page. You will also find many more spoonie travel interviews there. In this stormy weather it's very easy to wish we were lying on a gorgeous beach, soaking up the vitamin D.

When things go wrong

L-R Where I should be this week (source Pinterest)
Where I am this week 

This week I should have been bathing in some Autumn sun and eating my body weight in pastries and gelato. However things did not go according to plan. Not long before we were due to set off for the airport I fell into the grasp of a big M.E crash. The biggest most scariest one since the very first that left me hospitalised, 5 years ago. And so rather than being laid out on a sun lounger, enjoying some beautiful sunshine I am curled up in my bed warmed by my electric heat pad. 

To say the crash came at a bad time is an under statement. However it is not as if we were ignorant to the fact that this could happen. Life with M.E is filled with cancelled plans and disappointment. You are constantly aware that things won't necessarily go to plan. I'm just lucky it's not happened before a holiday before now. I actually woke up fine and had started to get ready, however I felt very suseptible to stress and the bustle going on of pre holiday have we packed this, where is this? I felt overwhelmed by it and it caused a bit of a shake and clumsiness. I dread to think what I'd be like as part of the McCallister family. Home Alone I guess ;-). Also my noise sensitivity was high. I believe it's called misophonia, when you percieve things to be louder than they are and they cause anxiety. In hindsight these were the warning signs of what was to come. However I believe it could have been worse. Had it happened actually at the airport or on the plane, the constant noise and movement could have caused it to be even worse. I think should I have somehow come round quickly and enough to get to the airport that this could have triggered another greater crash, which probably would have seen me hospitalised. One for having to try cope with all the stimuli and stress airports bring about on top of a nervous system that had already given me a big warning. And two for not respecting that initial crash and allowing my body the rest and recovery it vitally needs after a crash. Or it could have happened before our return journey. I know some people would think yay longer holiday but it's not much of a holiday when you're practically comatose and could end up in a foreign hospital.

However much you want to fight against a crash, doing so is superfluous. As is others trying to fight against it. Although it's incredibley scary all you can do is accept it and try to remain as calm as possible. The more you panic, which is easy to do when you are scared at what is happening, the worse and more prolonged a crash can become. Therefore as much as I knew the timing was very unfortunate and wished beyond belief that it wasn't happening I had to accept that it was. To simply focus on trying to be calm and keeping myself from any more harm. After all I did not have the strength to open my eyes or talk, how was I going to face the stresses of travel? A crash is a sign too much is happening. Although it might seem to you that you've not done much to trigger it at all. But sometimes the stress is having a lot on your mind and sometimes it's your illness having been worse than usual or you've had other issues or illnesses on top of that. Often the actual triggers can be small. A certain smell or loud noise. Causing your body to believe it's under attack and go into hibernation to try protect itself.

A crash is a big deal. However I wanted to say that despite what happened and despite all the emotion surrounding it I still remain positive. My determination to keep trying is not shaken. Of course I will be careful and respect the illness because burying my head in the sand is not good. But if this year has proved anything it's that adventure can be possible and a meaningful life can still be had, which gives me hope. And despite it being disasterous, things will be learned from this experience and my achievements won't be underestimated. I said in my Strictly experience blog (the chronic illness one) that I know many people get disheartened by experiencing PEM after having fun and breaking the norm. They feel hard done by that fun comes at such a high price. However for me I don't mind so much because it means I had fun. PEM is unfortunately a symptom that comes hand in hand with having M.E. It's just what having M.E is. You know what's in store for you and you fully expect it. However PEM from doing very little, from actually resting, that is unfair and painful. This is why I am extremely grateful everytime I get to leave the house or even just to get downstairs. Because nothing is guaranteed. You live with a chronic illness after all. Yes it comes with payback that's really not pleasant but as I have said many times life is for living. If you get the chances grab them. Seek out adventure. Seek out fun. I won't underestimate the value of being able to do things or begrudge the payback it brings, especially after this experience. Having made good memories and achievements is worth far more.

A piece of advice I wanted to pass on was if you ever experience a crash before you are due to travel and need to change your plans then be sure to get medical attention. This way they can confirm that you are in no fit state to travel and can provide information for your travel insurance. Seeking medical help is probably a good idea anyway, due to the seriousness of the symptoms. Getting other things ruled out can be important, we might have M.E but that does not make us immune to other illnesses. I know medical attention will cause additional stress on the body but they'll be able to see what's going on and can provide peace of mind.

Post crash I'm in PEM hell and there's still quite a bit of emotion that needs to be comprehended. But hopefully recovery is well underway. I'm working on a blog post about crashes for carers, how they can understand what is happening and how to help. Hopefully that will be up soon, when brain power allows. For now I have linked below a previous post that explains what an M.E crash is like. 

Hope you're all having a better time.

Sian X

Related post: What an M.E crash is like

Taking Chances

Source

Over the next two months things are about to get hectic. Admittedly things already feel hectic and that's from just trying to haul my ass through the pain of each day and make it out alive. On top of that I've been trying to change up my room. Hey I need a change of scene. I bought new furniture way back in January and only in recent weeks has it made it's way to my room. Trying to go through everything and throw away all those bills from 2010, and socks that are sadly not going to be reunited with their sole mate (see what I did there) has been arduous. It's frustrating wanting to get things organized, especially when you are surrounded by piles of stuff that has no place until you can put the new furniture in. And all that clutter is somehow oppresive and has it's own kind of noise that creates so much discord. I just want to get it done! However of course it's not that easy. I need to pace it. Doing too much on one day leaves me unable to do much apart from stare at all the stuff yet to be sorted for the next few days.

However this needs to be put on hold a little longer as things outside of the bedroom are about to get busy. Although ironically during most of that time I will actually be confined to my room a great deal more to be able to reserve as much energy as possible to cope with these events. In the next 6 weeks I have 2 big events going to watch Strictly Come Dancing and a holiday to Portugal. And after that it's my birthday. I feel a little overwhelmed but at the same time incredibley grateful. I know it's not going to be easy. I know things could go glitterballs up. I know it's going to take every little scrap of energy and I know it's going to give me horrendous post exertion malaise, making me very unwell. You should have seen me the day after getting the news I had Strictly tickets, fighting for breath and feeling like I had been ran over by the Strictly Express. I also know that maybe it's not the best thing to do in order to preserve my health and to try and avoid further setbacks. But I have said it before and I'll say it again life is still for living. Each opportunity is a gift. A chance to have something more than a closed off world of drawn curtains, high pain levels and mobility aids. Where all you see in a week is 2 or 3 people and generally that's just to give you some kind of assistance.

 More than ever lately I have felt the heartache of how small my world has become. How separate I feel from the real world, the world just behind my closed blinds or just downstairs. I spend so much time listening to all that's going on and not being able to be a part of it. Yet my resolve to try and make this life as good as it can possibly be for myself is at the most determined it's ever been. And that's saying something. I've been of the opinion that it's our own responsibility to create our own happiness and give ourselves chances for a long time. Possibly because I've spent more than half my life now with one chronic illness or another. Or perhaps as I have previously suffered from depression, anxiety and self harm and told myself countless hideous untruths about how worthless I was and that there was no point being alive. Maybe that has given me a greater perspective as well as a healthy respect for my mental health.

People say wow you're lucky and I'm not sure how much I'd agree with that. Yes I have a horse shoe in my room and a four leaf clover in my purse but I don't feel lucky. I'd rather my luck granted me good health and more independance, the ability to work and be more social. These opportunities have only come about though because I applied or booked. I put myself in the frame to have these chances. And chances is the right word, because they are big chances. I'm taking a gamble and hoping that on the day I can get out of bed. There's a high possibilty I won't be able to. That they'll go the way of many other failed attempts and literally all end in tears. Many will say I'm setting myself up to fail. I see it as setting myself up to try. And being a tryer is one quality I will always admire in myself.

Like I said I know there is a high chance things could not work out. I have a full understanding of the reality of the situation. There are many precautions and stratergies that go into any opportunity. Planning to the nth degree to make things possible. And like I said I am fully aware of the reality that things might not work out, despite everything being carefully planned out. As well as the effect such mamouth efforts will have on my health. You can read more about how I manage to leave the house from time to time and the effects it will have in my blopost let me put this in a way you might understand, which I have linked below.

Living with a chronic illness and knowing there's no cure or effective treatment I think you become even more aware of how unpredictable life can be. You feel that most of your adventures are probably behind you. That your life will never resemble that of the average human being again, or what we perceive to be average/ normal. It's a mental health disaster zone in many ways. But the human spirit can be a powerful thing. Somehow you find the strength to get through each pain filled day, somehow you adapt and find ways to cope. Yes, you cry and you curse and ask why this happened to you but somehow you find grit and determination to tackle each obstacle that is thrown at you. It's amazing. I have the upmost respect and admire everyone that gets through each day with a smile on their face and hope in their hearts. Hope is so important. And I think that by giving myself these opportunities it is a way of retaining that hope for me. I have to find some kind of life in this half life existence. I can't have the every day freedom and pop to the shops when I want. Nor work in my dream job as I trained to do. To leave the house at all it's in a wheelchair and with a family member. I'm the woman still going on holiday with her parents, which I didn't expect to be doing at this age, nor does society expect it. However it's the way things need to be to at least make travel somehow possible. To quite literally broaden my horizons. I can try and go after the extraordinary every now and again. As the saying goes "Shoot for the moon, even if you miss, you'll end up amongst the stars."

Sian X

Related  posts:

Let me put this in a way you might understand explaining how mitochondria work and how being able to leave the house on occasion doesn't mean we're better.

Holiday Get ready with me how I prepare myself to go on holiday, step by step from 6 weeks before to leaving for the airport.

Forget the boom and bust? Another post on taking chances and making the most of opportunities if we are able.

The Memory Jar A way of documenting all the special little moments and trying to seek out the good, despite the often bleak existence of chronic illness.

  

Let's talk about me

Hi everyone,

First of all I want to say a very big thank you for the amazing response to my last blogpost Let me put this in a way you might understand. I am so humbled that so many people read it and for the lovely comments I recieved. Thank you to anyone that shared it, inparticular those that shared it with family and friends in the hope that they may understand what it's like living with M.E or chronic fatigue as a symptom. I really hope that it helped.

It's been a little while since I've actually done more of a chatty post and actually discussed how I'm getting on lately, so I thought I'd take the opportunity to do so now that I have quite a bit to say. You know what it's like, living with a chronic illness you spend most of your time feeling like you are just going through the motions, trying to keep your head above water and get through it. Admitedly I have been doing my fair share of this for a good while now. However it got to the stage a couple of months back when I thought stop! I'm actually tired of feeling so helpless and hopeless. I think some of this feeling was bought about during May and M.E awareness month, because it becomes even more of a focus and you see so many posts and tweets. In no way is that a bad thing, I commend everyone that really made the effort and put what the could into raising awareness. However as a sufferer there's only so many of those posts you can read and not be reminded that we have it tough, and not many people out there are offering us any hope. Which then leads on to thoughts of how crazy and neglectful that is, when there are hundreds of thousands of people who are incredibley unwell. It makes me sad and it makes me angry. Anyhow, these feelings made me think "am I actually putting up with this a little too much?" Let's face it if anyone else felt half as bad as we do for only a day they would probably go straight to the doctor or hospital. Yet because we know we have M.E, we automatically put up with it and think well it's just the old M.E. We're just so used to feeling horrendous and being told that there's not much that can be done for us. I think this can be dangerous sometimes, especially if we develop new symptoms, because we're not immune to other illnesses and conditions either. We shouldn't always put things down to the old M.E and neither should our doctors for that matter.

So I decided to make an appointment with my gp and talk a bit about how neglected I feel. Not neglected by them as a gp practice but because I feel so left out in the wilderness due to the lack of help there is for us in general. It really baffles me how so many people can just be left to suffer and nothing is done about it. It felt good to get things off my chest. My gp decided to run an armful of blood tests, to check how everything was. Or you know whether they still say you're a picture of health (eye roll), which of course they did. My folic acid was a little low which could have affected my fatigue level a bit, so I did have a course of that for a month to help boost my levels back up.

I took the opportunity to share some of the research that I've been reading about online. Inparticular the one about changes in the white and grey matter in the brains of M.E patients. If you would like to read more about this click here. This was one I resonated with, because a few months before I was diagnosed I needed to have an MRI scan because my prolactin hormones went a bit crazy due to some medication and anxiety. However when they did the test they found what they described as lesions and abnormal changes in my white matter for someone of my age. The neurologist I saw was a bit baffled as to why this had ocurred and why I was not having any physical symptoms. Apparently the findings were conclusive with mini strokes. However with my health seeming to be ok, other than my anxiety, we simply decided to change my medication and to monitor any physical symptoms should they arise. I did get retested shortly after my M.E diagnosis and things seemed to have stabilised. However when I read about this research it did make me think about this time and whether this was some kind of precursor for things to come. This combined with an increase in muscle switches lately encouraged my gp to write again to this neurologist to investigate further and find out whether there could be a connection. Who knows when that appointment will be though? I've not heard anything so far. Plus I'm not holding out too much hope for it seen as we're used to things not being that simple. But you never know.

Recently I read a blogpost by Jess at Why is life so lush all about how she had got her mitochondria tested through a blood test. You can read that post here. This blood test is not available on the NHS but is one of the tests offered by Dr Myhill. Jess wrote about how she had had the blood test and sent it off to their laboratory to be tested. Dr Myhill then analysed the results and sent the findings along with suggestions of future treatments that she recommended based on the results, to her gp. I've been reading a lot about mitochondria lately and I think it offers a real explanation as to why we feel as we do and how post exertion malaise is our enemy. Therefore I think getting this blood test would help in a way to have more tangiable proof that something is wrong not just feeling terrible and a whole heap of symptoms. Although part of me does think that mine will come back and tell me nothings wrong, just to bite me on the bum. I showed this to my gp and discussed it with him as I wanted to have his cooperation on it too. To be sure that he would take on board the results and suggestions and help me to implement them. This is not something he'd heard of, however he was keen for me to give it a go if it meant having answers and that he was made aware of things to try going forward. I think having your gp's cooperation on this is important as they are the ones that will recieve the information and who can hopefully help you afterwards. I'm sure some would disagree with it but luckily mine was willing to help. Unfortunately as it's not available on tbe NHS it's quite expensive, so I've waited a little while till I can afford it. Saving up for a blood test is definitely a new one. However in that time the site has gone a bit crazy and had a big influx of patients, meaning they've had to put a holt on any non direct patients for the time being. They reckon this is possibly the result of her new book Mitochondria not Hypochondria. So that was a bit annoying. In the mean time I've ordered the book in the hope that it holds some answers too. I'll be keeping an eye on the website for when blood tests can be reordered.

So that's pretty much where I'm up to lately. Trying to get by but at the same time being so fed up of just getting by. I need to try to stay as positive as I can but at the same time I recognise that getting upset and angry is ok. It doesn't mean I'm hurtling down that depression spiral. It just means I'm acknowledging that things aren't lollipops and rainbows and is it any wonder? It's healthy to acknowledge these feelings and let them out. I think it's a miracle how we're not breaking down more, with all we have to go through. Hopefully soon I'll be back to my chipper self.

I have a few other things I'm looking into to help me regain some control of my life and illness but I'll save them for another day when I'm a bit further down the line.

I hope everyone else is doing as well as possible.

Sian X

Let me put this in a way you might understand

Let me put this in a way that you might understand a little better, what it's like to have M.E. I know at times it can be confusing or not what you'd expect. However, this is most probably because of a pre conceived perception of what you may think living with a chronic illness is and the sometimes conflicting things you might see on social media. No one's social media account represents them completely or documents everything, and the same is true of course of those with a chronic illness. On social media I tend to only post about the happier things that happen. My profiles and feeds (as well as those of many others with a chronic illness) may look like a highlight reel. The things that I've been lucky enough to be able to manage to do. Except of course during April and May when I go into campaign mode to raise awareness. I can well understand that onlookers will see some of the posts and think "well things are probably not that bad then." "She managed to go on holiday." Sadly they may even think I'm overreacting or worse that I'm faking. It can be a little like when someone pulls a sickie from work then post on social media that they've been on a massive bender. Before I post things I often wonder " what will people say/think if I post this? Should I even post it at all?" I know many people in the same boat that are so careful with what they post because they fear the backlash of nasty comments. How it may look as though we pick and choose the days we are ill or better. Or that old chestnut "funny how you can't work but you can go out."  It's true, we do have days that are better than others and days that are wore than others, but there's very little say in how we influence them. I'd like to think that those that knew me before I became ill, which is probably the biggest percentage of my Facebook friends, would know that these statements do not match my personality. However I understand most will be confused. I am confused a lot of the time too!

Anyway, in order for me to do the things I post about, such as going out for dinner, shopping, to the very big deal of going on holiday a lot goes in to trying to make that happen. Like I said there's not much influence we can have on the outcome but there are things we can try. In this modern age most of us won't leave the house without first charging our phone battery to make sure it works when we need it throughout the day. For someone with M.E to attempt being social or to attempt something around the house the same kind of thing needs to apply. We need to 'charge' ourselves up. Sadly, we can't just plug ourselves in. Put basically, for someone with M.E charging up means doing nothing, resting, and by nothing I mean nothing; limiting our activity even more to try and reserve energy and store it up to be used to get us through the event. In chronic illness circles we call this saving spoons. For more info on why we use the spoons analogy read my blogpost on the spoon theory.

 So if we know we have something coming up, a doctor's appointment (see not always fun stuff) or people coming round, the days before or sometimes even a week or more (depending on severity and the type of event) we need to try our best to conserve our energy to at least have a chance.

source: Pinterest

However we are never going to have 100% charge, in comparison to our old selves or a healthy person. Using the functional ability scale by The Association for Young People with ME currently I am actually around 30%. And that is at best! Those times you might see me out of the house, I am functioning at a maximum 30% (it's probably less especially by the time I've got ready and left the house) of a healthy 'normal' person. You can learn more about the functional ability scale here, http://www.ayme.org.uk/functional-ability-scale

This is because people with M.E aren't able to produce energy properly. The mitochondria in our cells, which is the bit that creates energy, is faulty and therefore cannot produce energy as it should. So imagine going to charge your phone and the maximum you can get is 30% of your battery life and that amount of charge has to last you a few days, a week or sometimes more. You'd be demanding a refund or a new one right? If only the same could be done with unhealthy bodies! Therefore even by resting before hand it doesn't mean we're fully fit and healthy when we leave the house and that we have a full battery to use.

 Also because we only have that limited power everything takes so much more effort. Talking for longer than usual may make you out of breath. Getting up the stairs might require a few stops along the way. Adversely the more effort we're using the more charge we're eating up. This is why mobility aids and other equipment are in some respects our saviours as they allow us to do things by minimising the effort it would require without them and use up less of that precious energy. This is also why you may be confused if sometimes you see us standing or walking and others we're in a wheelchair. We might be able to walk a little but not very far and it will exhaust us a lot quicker. Therefore wheelchairs and mobility aids allow us to hopefully do a little bit more. It's also important to know that that 30% charge has to last us throughout the event and even longer. Obviously the event is going to take up the majority of that energy and leave you with just the dregs, which is all you will have to run off for the days/ week/ weeks following.

Unfortunately because of the fault in our mitochondria we can't just eat something or have a quick nap, or a good nights sleep to restore us like a healthy person would. They may work fractionally but nowhere near as effective as they should be, due to the mitochondria not absorbing nutrition as effectively and turning it into energy. As well as because our sleep is rarely refreshing. You only start to slowly regain some quality of living as your body has the amount of quality rest, recovery and sleep it needs to recharge sufficiently.

Source: Pinterest

This is the part you won't often see because we're cooped up, house bound, bed bound, looking slobby in our pj's. Not only do our bodies not produce energy properly but M.E is characterised in particular by a symptom called post exertion malaise (PEM), which is pretty much as it says, although malaise might be too mild a word sometimes. Therefore as soon as you exert yourself (and exert refers to simply moving, talking or thinking,) you are then going to feel more ill as a result. Bummer huh?! So the bigger the exertion, such as a trip to the shops, the more drained of energy you will be and as a consequence of such a large amount of exertion you can feel extremely ill. Although because any activity is exertion sometimes the post exertion malaise can be just as bad after smaller activities. For example to get down the stairs might use up less energy and be a task we can manage on a day when we know our energy level isn't at it's best. However say our energy level is at 10% by going downstairs that energy quickly gets eaten up, leaving you at the very dregs again and feeling potentially just as bad as a bigger event. Just last night I asked for help to come down the stairs as I was getting sick of the sight of my bedroom, only to need putting back to bed 20 minutes later because I was so exhausted and feeling like jelly after the exertion of coming down the stairs. Nice kick in the teeth there !

Many people call this payback. I sometimes refer to it as a side effect from life. I don't get many side effects from tablets but I sure do after doing things. PEM feels like being ran over by a bus or walking straight into a brick wall. It hurts! And this can last for weeks. I guess the closest thing I can compare this experience with that is more relatable is that of having a hangover, but one without the alcohol and lasts for weeks. It feels like punishment. A from Pretty Little Liars has nothing on PEM (Who the hell are you?). Symptoms vary but can include extreme fatigue, exhaustion, muscle aches, muscle twitches, tachycardia, palpitations, breathing difficulties, cognitive problems, sore throat, unable to talk. See my post on what an M.E crash is like for a bit more insight on what we might experience, which you can read here .

However this 'charging up' to be able to do things doesn't always go to plan. Quite often life will get in the way, throw you some "drama" that you need to deal with that will use up that saved up energy and use it up quickly because you are stressing about it. Ironically one instance of mine where this happened was a faulty phone charger. Life can constantly throw things your way that you have to deal with in the moment as best you can, with what you can. A sick relative, an unexpected bill, something breaking, a cold or stomach bug. We're not immune to life's dramas. But all that stress and using up a lot of physical, emotional and cognitive energy is going to lead to some quite nasty post exertion malaise. But what can you do? You can't stop them. Then there are times you can be as 'behaved' as possible before an event and have no dramas beforehand but when the day comes you still don't have the energy and feel too ill to do it. Like I said, we don't get much of a say, no matter how much we try. We're chronically ill after all. Sometimes the energy you use up just to get dressed and ready can leave you too exhausted to actually go anywhere, except back to bed. It's happened so many times. You feel like Cinderella all dressed up with no where to go. That stings to be honest. To know you have given yourself the best possible chance and still it's not enough. But simply being ill uses up a lot of our energy, because our bodies are in a constant state of high alert. Pain is exhausting. Our nerves can be extremely sensitive. Being ill is exhausting and relentless; you're constantly reminded in some way or other that you're sick. So even though you may think "this is so unfair, I've done nothing" it's your illness that has been draining you of that energy.

So to sum up, if you ever see someone you know (or don't know) that has a chronic illness post about going out etc, know that this is certainly a rare occurrence. That they have probably posted about it as they are so made up to have been able to do something relatively normal. To escape the confines of their room or house. But know that this hasn't been easy to do and that there will be consequences as a result. Feeling extremely unwell, barely able to move, just because you did something as seemingly simple as a doctors visit or a meal out. There are times when we think is this little bit of normality even worth it for all the suffering that will follow? However these moments are important for our well being. To break the cabin fever. Because being predominantly bed bound and house bound is hard emotionally, and can be lonely.  I understand it can be confusing but just remember these moments are the exception not the rule. Little moments of trying to grin and bear it amongst the harsh realities.

I hope this has clarified things some what and put them in a way that is a bit simpler to understand. If you still have questions though please do ask. I'd rather answer questions from someone trying to understand than someone passing judgement without trying to understand.

Thanks for reading

Sian X

A royal day!

Copyright: Sian Wootton

The above photo look familiar? Yes that's me as me. Recreating the inspired drawing Princess Charlotte (the first one not the new baby one) drew of me. May 12th seems so long ago now and yet I am only just getting round to blogging about the big day. In case you are in need of some context and wondering why on earth I have a helmet on my head and I'm holding a spoon, May 12th is M.E awareness day and myself and a group of other sufferers all dress up (as much as we can) as Princesses all in the name of raising awareness and for charity. The event is called The Princesses and M.E a play on The Princess and the pea story about a Princess that could not . As a collective we are known as Team Princess. You can read more in my blog post. 

Copyright: Sian Wootton
Feeling Victorious

 

This year Team Princess were able to raise money for every single registered M.E charity within the UK and one in Australia, which to me is an incredible achievement. Our current total is £5858.24 a fantastic sum that will really have a positive impact on the services that the charities are able to offer for sufferers and their families such as helplines, forums, legal advise, leaflets and brochures. As well as helping to fund biomedical research into the illness. Slowly the tide is turning in the M.E world. More research and trials are being done to find definitive answers as to what M.E is. Due to this research one thing is clear, we have more proof than ever that M.E is a physical and neurological illness. Too long has it been wrongfully labelled psychological and not gained the respect it deserves. And it is with due credit to the charities that these studies can be afforded. 

Copyright: Sian Wootton
Queen of Dragons

Of course raising money is not the sole purpose of this event, our biggest goal is to raise awareness. Within the M.E community we all know too well the injustices this illness has faced and are all too aware that the impact of them mean those outside of the community either don't know about the illness at all or if they do then the chances are they believe the misrepresentation that M.E is just tiredness and not at all serious or deserving of charity. Every time I write a sentence like that an image of me wanting to slap Ricky Gervais comes into my head. I wonder why? ;-) Therefore it's really important that we share the truth. Share our stories. Educate others about the true nature of this illness and the lives it's tearing apart. We deserve to be respected! We deserve hope! And awareness is the key to achieving this. I'd like to believe that the more this illness is shouted about that as a result we will get better funding, an allocated budget of its own to fund treatments and research. Did you see the recent march on the Whitehouse calling for more funding? That day I felt hopeful.

Below are photos of all the members that were well enough to get dressed up on the day (or during awareness week) and share their stories in the hope of one day getting that fairy tale in the form of an effective treatment or a cure.

Copyright: Alison West
Ali as Princess Anna

Copyright: Lisa Bennet
Lisa another Princess Anna

Copyright: Charlotte Green
Charlotte as Shera The Princess of Power

Copyright: Jenny Horner
Jenny as Sleeping Beauty with her faithful guard dog

 

Copyright: Sally Leadbeater
Sally in Sleeping Beauty mode

Copyright: Anna Jones
Our Queen of Cake

Copyright: Clare Wood
Clare representing Invest in ME, so impressed she made her own crown

Copyright: Emma Anderson
Modern day Cinderella

Copyright: Sarah Mill
Looking lovely

Copyright: Jenny Billings
When you are a Princess for the day, wear all the jewellery!
 

Copyright: Jo Hardstaff
Pyjama Princess!

Copyright: Laurna Thomson
Our Ice Princess

Copyright: H Grungy Parrot
Last minute princess

Copyright: Jane Shadow
Jane and her daughter had a special photoshoot

We were also suppported by mini Princesses who wanted to join in the fun.

Copyright: Katie Anscombe
Princess Sophie

Copyright: Jane Shaw
Princess Emily and all her fiends

Copyright: Alison West
Costume change for Alison into Princess Elsa with her mini Princess as Anna

Copyright: Sian Wootton
The Princess and the Frog

Oh and one Frog Prince! 

As well as some real life furry mascots that got roped in whether they liked it or not.

Copyright: Helen McKaye
Princess Lucy

 

Copyright: Jac Oliver
Princess Poppy

There is a pooch under that tshirt

Copyright: Michael Dickinson
 

Copyright: Michael Dickinson

This years event was also tinged with sadness as we remembered a dear friend who sadly passed away last year. Allan wowed us all when he dressed up as a Princess for last years event. It always make me smile when I think of him going to h&m to buy tights that matched his dress. In honour of Allan we all wore something pink to ensure that he was still a part of our team. We were also blessed to have Allan's son Michael and grandaughter Milla (pictured above) join in the fun this year to raise money in Allan's memory.

Copyright: Jac Oliver
Princesses light up the night

Princess Jac our Aussie Princess took awareness to a whole new level when she campaigned to get the Adelaide oval lit up blue for M.E awareness. What an incredible achievement.

It's been great to get feedback from our auction too. To hear stories of items being given as gifts. One of our sweet hampers was donated to a special needs school to be used as a raffle prize at their Summer Fair. I think the number of raffle tickets has increased thanks to all the children seeing the hamper in the office and getting very excited. Thank you to Geoff Allen our resident Prince Charming and Aly Bentham our Fairy Sweetmother for making this possibe. 

I really could not be more proud of everything we achieved as a team. This group of people and the majority of the M.E community as a whole are the reason I feel more hopeful each day that change is coming. It's hard that so much of the campaigning is patient lead, because of course exertion makes us so unwell. But at the same time it brings out that inner strength, fight and determination, that is so powerful. We will be heard!

I'm so excited already for next year and all ready planning ahead. 

Queenie X

(Oh no this will be my last blog post signing off as Queenie until next year. I'll still wear my crown most days though. As should you.)