A little M.E update

It’s been quite a while since I sat down to write a blog post yet here I am again, using writing as my therapy of choice.

I guess I felt compelled to write today after spending several hours yesterday with mum and dad at an Action For M.E conference. We went along hoping to find out more about what research is being done, to network and to get some useful, practical advice. I think all three of us would say we’re glad we went although it wasn’t easy.

I’ve been struggling recently with my illness, I suppose because I’ve been ill for so long now, people almost forget that I am ill. Let me expand on that a little. A lot of this is my problem, my insecurities, but I have started to feel like I need to justify things that I do. I am wary that I feel like some people are judging me for STILL not working yet being able to do other things. I guess one thing has never changed, people don’t see what goes on behind the scenes. The careful planning that goes into pacing myself, the constant pain and sensitivities. The fatigue. The constant, wading through treacle, un-refreshing sleep, fatigue. Yes I smile and yes I can now wear make up but NO that does not equal me getting better. I am not. Yes, I am starting to do much more than I could before but that is simply down to the fact that I can manage my symptoms, most of the time. If I didn’t do this, I would not be able to do anything.

For example, I have had to cancel the few lovely things I had in my diary for the next few days to simply rest and sleep. Not go outside, not communicate with anyone, just recharge my batteries by doing the least stimulating things I can in order to re-charge. My body also likes to show me in other ways that it needs to rest, my symptoms get worse but also for me, I get skin flare ups – my right eyelid is red raw and painful with eczema underneath. I don’t always talk about these periods of time, because I usually plan in one or two days like this anyway to avoid major flare ups – but people don’t see or hear about those.

So, going along yesterday to hear people talking about something that myself and my family live with on a daily basis was, in many ways, a comfort. Truly heartbreaking to hear of people telling their stories of how their GP’s treated them like mine have me but comforting to know that I am not the only one. Frustrating to hear that the benefits system is failing so many who are in desperate need but comforting to know our battle isn’t a lone case. Encouraging to hear that the charities medium and long-term plans are to get the World Health Organisation to sit up, take note and help us by funding more research but devastating to know that short-term, all we can do is try to persuade our GPs to simply take the time to understand what living with M.E is like.

But amongst all of that, we met Alice Kelp. We didn’t make it up to the conference in time to hear her whole talk because, well, I couldn’t get up to London that early. But, we caught the end of her talk and it was inspiring. Alice is now 24 but cannot remember the year of her life from age 14-15 when she was almost comatosed, bed bound with M.E. I must admit, because we only caught the end of her speech where she was talking about what she does now and how she is proud of having M.E, I did think, god, this is not for me, plus – HOW did you go from being that bad to being able to talk about your life now?

But, I sat with Alice and her mum whilst we had some lunch and it all became clear. She was nervous to share her story, she didn’t want people to assume her story was only one of positivity because it isn’t. There was no lightning bolt occasion that she could pin down to explain how or when she began to feel better, her body just gradually got stronger. It’s like the M.E just burnt itself out. She had to go down a year at school and fight hard to get her teachers and friends to believe that she wasn’t just attention seeking. She lost 4 stone in weight and became anorexic because she became intolerant to different foods and felt nauseous. She had to learn to walk again because she lost all the muscle tone in her legs. Her mum had to give up work and be her full-time carer and be by her side because, for a while, she was suicidal. This is what M.E can be like. But, luckily for Alice, she found a pediatrician who listened and wanted to learn and research and help and gave her that lifeline that she needed. He believed in her and believed she deserved his time and help.

Like me, she’d tried everything; acupuncture, reflexology, saw a chiropractor, various herbal remedies, pacing, CBT. But, ultimately, none of that worked to cure her. She has never been cured, she is not better. Yes, she now has a job and she has recently moved in to her own property but she has to live carefully. She paces everything she does carefully, she knows she needs 9-10 hours sleep a night otherwise she can’t work, she knows she has to pick and choose what social events she attends and has to plan in rest. She is protective of her illness but isn’t ashamed of it and certainly won’t apologise for it. She gave me hope. Hope that one day I will be able to achieve the things that she has – work, home, travel.

It was also refreshing to hear her stance on CBT. Like me, she doesn’t want it removed from the NICE guidelines. The wording needs to be changed yes, because it is NOT a cure, it is a management tool to help you deal with how M.E impacts your life. Of course, it all depends on the therapist you get and how much they understand M.E but if we removed CBT from the NICE guidelines, what is going to replace it? At the moment, nothing. So, GPs wouldn’t have to refer us or give any further help because the  guidelines wouldn’t force them to. At no point have I ever claimed that CBT is making me better or curing me and nor has my therapist. What is has done is help me deal with the depression that has come as a result of living with M.E and the changes it’s had on my life and my families. It’s taught me how to change my thought patterns to encourage me to try to find the positives and it’s helped me pace myself properly in order to get that joy back in my life.

Alice works for Notts County Football Club who employed her knowing about her M.E and help her work alongside having a chronic illness. So much so, that they helped her produce a one minute film with the team to explain to people what M.E is because in September, the players wore shirts with ‘Action for M.E’ on the front.

So, what I am asking, is that you take a minute to watch that video – go to YouTube and search ‘Notts County action for M.E’ and then perhaps help out with  Christmas appeal. One of the facts you’ll hear is that since 2012, the government has invested only £2 per year per patient into M.E research, that’s less that a match day programme. That fact in itself feels like a punch to the stomach – for me, that means that since I’ve been ill, only £6 has been spent on research to help find a cure.

So, from noon on Tuesday 27th November until noon on Tuesday 4th December, any donations made to Action for M.E will be doubled. As a family, we would far more appreciate a tiny donation to this than a Christmas card this year because it will help so many people living with M.E to get the research that we so desperately need.

You can donate now at: http://www.actionforme.org.uk/BigGive2018

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M.E is a hidden, life changing illness that impacts not only the person with the illness but those they are closest to. Like so many hidden illnesses, remember that just because someone shows up, smiles and looks ‘well,’ that can be disguising what’s going on underneath.

#hairlesshannah

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You’re still sick?

During my CBT session this week we talked for a little while about the fact that it’s almost three years since I got sick and flew home from Dubai. It’s funny because leading up to the 1 year/2 year milestone I was very hung up on dates and times whereas this past year I have focussed very much on the here and now, taking each day as it comes. But it just naturally cropped up with something we were talking about and it really felt like someone had punched me in the stomach.

Isn’t it funny how such a small thought can up root so many feelings and emotions? I mean, nothing is going to change just because it’s coming up to three years, it was just saying it out loud felt like it was a really long time. And it is. However, this time, I had a little tear over it but was able to chalk it down to, yep, it sucks but you know what, it is what it is and time passes whether you feel sad about it or not.

The thing that I am struggling with at the moment however, is feeling like I have to justify myself a lot more. In my CBT session we talked about how someone had asked me recently if I felt like I was getting better. People, see me out or posting online, see me smiling and happy and coping slightly better with things that perhaps I wouldn’t have a few months back. But, I honestly didn’t know what to say. Yes, I feel like I am taking steps forward but am I feeling ‘better?’ No, not really. And that’s why I love my CBT sessions because my therapist was able to explain something in a way I hadn’t thought about it before.

She totally understands my life living with ME. She doesn’t think it’s in my head, she doesn’t think I’m a weak female and she’s always honest with me. She’s never ignored the fact that it is a chronic illness, one that has no known cure or treatment and one which I will live with, most probably, for the rest of my life. However, when we started talking about me ‘getting better,’ she explained it like this: She has asthma. She can live her life because she’s put things in place that help her to do this i.e. medication, exercise and a healthy diet. If she were to take these things away, her asthma would become worse and she wouldn’t be able to manage her symptoms and wouldn’t be able to continue with her daily life. This is the same for most chronic illnessess. I am able to manage my symptoms better now. I am kinder to myself and follow my set targets to the letter because I know that if I push those boundaries, I am going to suffer and I am going to suffer badly.

If I were to take away all the strategies, medications and methods I have in place, I would be back at square one. Well, maybe not square one but pretty close. My life has changed forever, I will always have to be aware of stressful situations, not pushing myself too much and keeping a very close eye on what my body tells me. That doesn’t not mean I am lazy. That does not mean I don’t want to work. That doesn’t not mean I don’t want to be independent. That doesn’t not mean I want to miss social events. It means that I am managing my chronic illness on a daily basis in order to live an improved version of the life ME took from me. But, as always, don’t always be fooled by my smile and the words, “I’m fine.” I push myself and I show up because I refuse to let this illness beat me,that doesn’t mean I’m better.

It’s funny, some of you may know that my eyelashes are growing back and, even if I do say so myself, they are pretty damn gorgeous! But to some people it has indicated that I am on the road to full recovery. Nope. My alopecia is unrelated to ME. Yes, it is an auto immune disease but just because my body is producing hair again does not equal me recovering from ME. Indeed, it most certainly makes me feel better in myself and has grown my confidence but it hasn’t stopped my constant fatigue, joint and muscular pain, light and noise sensitivity, pins and needles, insomnia… do I need to go on?

I’m not complaining here, I think I am more at peace now with my situation than I’ve ever been. It doesn’t stop me from having hours, days or weeks where I feel utterly devastated by what’s happening to me but this is my life. I only get one chance so therefore I need to appreciate it, smile and ignore the people who question if I’m still ill or not. I posted a quote on my Instagram the other day which struck a chord with me: It doesn’t matter if your glass is half full or half empty…be grateful that you have a glass and that there’s something in it.

Have a fab weekend.

#hairlesshannah

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Afflicted

According to the dictionary, the definition of an enabler is:

a person or thing that makes something possible. A person who encourages or enables negative or self-destructive behaviour in another.

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Some of you may or may not have heard about or seen the new Netflix series, Afflicted. It is a series that follows seven people living with chronic illnesses or as they put it, afflictions.  Before I watched, I had already seen many people tweeting and blogging about the series, it seemed that the chronic illness community were not happy at all. So, like with all of these things, I felt I needed to watch before passing judgement or comment.

I managed to watch one episode and decided not to watch any more. I flicked through the second and third episodes but found it upsetting and stressful. As with any of these series, the film makers had clearly got their angle and that was all they wanted to follow. It appeared that they wanted to portray these people as mentally ill. Without directly poking fun at them, that’s how it came across..dismissing autoimmune, neurological illness and just simply labelling these people as crazy.

For me, it was damaging. There is enough disbelief out there about these curious illness that people, including doctors, don’t believe in and this series was adding fuel to the fire. They focussed a lot on what homeopathic treatments the subjects had turned to, making them look hippy and alternative.

They failed to say that they were under specialists and had tried anything and everything to try to find help and a cure. They missed the point that these people were turning to alternative therapies because no one out there is putting money into science to find cures and treatments and even causes for these illnesses. They failed to emphasise the point that these people, like all chronic illness sufferers are desperate. They will try anything to see if it has an impact, no matter how small on their symptoms. It’s interesting to read able-bodied, ignorant people writing about this.

The programme touched on the point that some of the subjects were turning down expensive treatments that were lacking in foundation or evidence. Again, failing to tell people the actual cost and not pointing out – how would these people afford them? So, as so perfectly put by @gnomesChainey on Twitter: “Able-bodied people: They’re turning down expensive treatments! Don’t they want to get well? Also able-bodied people: Why would they pay so much money for unproven treatments? It’e like they don’t care about science at all!”

The emphasis was about the mental side of the illnesses. Why aren’t these people on anti depressants? Well, most of them were. That doesn’t make them crazy. That doesn’t ,mean the illness is in their heads. It means that the illness has affected them so badly that it’s impacting on their mental health too. If you were trapped in your body or your bedroom, if you were being told by medical professionals there’s nothing more that can be done for you, you too would probably suffer and need some help and anti depressants are an option.

There was a line in the series that hit me like a truck: “You can be deluded that you are sick. You can believe that you’re sick when in fact you’re not sick.”

And then, people who know nothing about chronic illness, have started being keyboard warriors and accusing the carers of these people of being enablers. They’ve watched the programme and seen parents, husbands, wives and friends caring for these people and decided that they aren’t caring for these people, they are enabling them. Not helping them get better, enabling them to continue to think they’re ill when they’re not.

Wow.

Now, I know first hand what this is like. Early on in my illness I had someone feel like they had the authority to email my mum and tell her that both she and my dad were not giving me the help I needed. That they needed to give me a kick up the backside and encourage me to get on with things. They weren’t helping me get better. If I hadn’t experienced this, I wouldn’t have believed it. How do people have the audacity to pass judgement? To have the guts to tell people what they are and aren’t doing the right by their child!

People forget that when you live with a ling term illness, we get good at lying. We get good at covering our pain. My pain threshold is pretty high now, I can mask the constant pain and I can act like I’ve got energy when it feels like I’m wading through treacle. My parents are not enablers. Believe me, if you knew my parents you’d know that they would be the first people to “give me a kick up the backside” if they thought I was being lazy.

My parents are quite the opposite. They enable me. Without them, I wouldn’t be where I am now. They support  and push me in the kindest, gentlest ways. They get me to appointments, they see me when I’m struggling and need help, they lend me an arm to hold onto when walking hurts, they give me their shoulder when I need to cry.

I would also like to point out that the majority of chronic illness sufferers that I know, including myself, are our own enablers. We do not want to be ill. We do not want to be relying on others financially, emotionally and physically. We don’t want to be on benefits and out of work. We don’t want to avoid social events, holidays, alcohol, sunshine, work etc etc etc. We are so tuned into our bodies that we notice the slightest change be that an improvements or new ailment.

At times, my parents will tell me to stop. That doesn’t make them enablers. They live with me, they see me at my best, my worst and my ugliest. So they know that I try, every single day to achieve things. But also can see me wilting when I’ve done too much and know what the fall out could be, so, to stop that happening, they will sat, do you think you’ve done enough for today? Maybe you should go and have a lay down? Why don’t you sit down and do a bit more later? This is not enabling behaviour, it’s love and support at the highest degree.

My parents at retirement age had not planned for their 30 something daughter to be living back at home, to be caring for her, supporting her financially. That was not in their plan. So therefore, I highly doubt they would enable to me continue to be like this forever…think about it, it’s just the most ridiculous thing I’ve ever heard. No one would want to live my life or live the life my parents have at the moment. And I’m not saying they would change it because they wouldn’t have it any other way than being there for me in my time of need, but we only manage to deal with it because we live in hope that one day we can go back onto the right paths and live are normal lives again.

I guess what I’m trying to get across here is linked to a lesson I always do on the first day of the school year with my children in class. I get them to squirt out a whole tube of toothpaste and then try to get every last morsel back in using a toothpick. Obviously it can’t be done but they have great fun trying. And then I tell them, the toothpaste is the words we speak. Once those words come out of our mouths it’s impossible to take them back. They can cause unknown hurt and damage to people.

Afflicted is out there now. People living with chronic illness, especially the people featured, have had untold damage done to them. They are experiencing trolling and cruel words from people who have zero clue. One participant tweeted: “ We hoped that with it might come investment in research to find biomarkers and better treatments. We never fathomed that we were participating in a project that would instead expose us and our communities to further ridicule and disbelief.”

It’s also given people who have no understanding, a programme to watch for entertainment and laugh and jibe and make fun of people who actually need love and understanding.

The wonderful Jennifer Brea who spent five years making the film Unrest about her life living with M.E. has been fighting our corner on Twitter since Afflicted came out. She is a hero in my eyes. In response to a tweet someone put out about enabling people with chronic illness, Jennifer replied: “ Many people with severe chronic illness, if not “enabled/supported” by loved ones, would simply become homeless or commit suicide.”

And I’ll leave it there. She says it all in that one tweet.

#hairlesshannah

 

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Mental Health

This week is mental health awareness week. Mental health has never been something I’ve ever really thought deeply about, yes, you know you have to “look after your mental health” but what does that really mean? But before I start, I would also like to add in a disclosure here to say that this blog post is based around my experiences and opinions and therefore, if you feel you need help and advise, please go and see your GP or use one of the numbers at the end of the blog. This blog is focussed on mental health linked to my experience of having a long term illness and therefore some of my thoughts and opinions won’t marry up with other people’s mental health problems. Nothing I have written is there to offend or upset anyone.

I suppose mental health is something I’ve considered more since my own has become an issue since becoming ill. I’ve always been a glass half full kinda girl and do try, as much as possible, to focus on the positives.  But sometimes, that just isn’t enough to see you through. Positivity is not a medicine and depression, along with many other mental health issues are not something you can simply snap out of. It’s an illness not a choice.

I started taking anti depressants about a year ago now however, I had been offered them as a “treatment” within the first or second appointment I had when I returned to the UK.

All too often I think that anti depressants are prescribed too easily. Don’t get mad at me, I don’t mean that to be an offensive statement. When prescribed properly they are wonderful however, in my opinion, sometimes, they are used as a quick fix and for me, this is dangerous. There are so many other avenues to explore first but because of lack of money, resourcing and time, those options are often not accessible. Waiting lists to see councillors on the NHS are months and months long…when you need help, advice or just someone to talk to, this just isn’t good enough. GP’s have 10 minutes to see you, assess you, talk to you and give you a course of treatment…prescribing a pill is often easier and quicker than making another appointment to talk or write a referral letter.

My initial approach, which I do still stand by to an extent, was that I didn’t need anti depressants, anyone in my situation would be finding life a little tricky in my situation and I just needed some support. However, as time passed and life didn’t get easier and as the reasoning behind the use of anti depressants in my situation was explained, together, myself, my parents, my doctor and psychologist agreed it was time to give them a go.

This wasn’t a quick fix option, it took months of trying various ones to discover which was my best fit. I had severe reactions to some and others just knocked any kind of emotion out of me which I hated. Eventually I settled on the one that suited me and my body best and even that has it’s side effects. I have been monitored and guided through how and when to take them and know that as and when the time comes when I want to come off them, I have to follow a careful plan to wean myself off. They have helped me greatly, I am more balanced and am able to approach my daily challenges without feeling like an emotional wreck. I have most definitely been very depressed at times and have hidden it well but the team around me, including my CBT therapist, recognised this and suggested them only when it was clear they were the next step.

My point is, they are not a quick fix. In my opinion, they should not be a first option.

I think I have gained a much deeper understanding of mental health and the importance of looking after it through my own experiences. CBT has taught me about unhelpful thinking patterns and how to turn negative and unhelpful thoughts into more rational, level thoughts and this has made a huge difference to me. Being ill has also taught me the true importance of taking a step back, no matter how busy you are, in order to care for yourself. Whether that be having a bath, going for a walk, meditating or writing a journal, doing something for you and only you every day should be at the very top of your daily “to do” list.

There has been so much coverage in the press about mental health recently and that is fab. Talking is what we all need to do more of. The good old saying of, “a problem shared is a problem halved” really is true. But that doesn’t mean it’s easy. If you are feeling low, many people, including myself, don’t want to burden others with these thoughts and that in turn makes everything worse. But if you don’t have enough time with your GP and you’ve got to wait X number of months to see a councillor, then you need to find someone else. It doesn’t matter who, just find someone. Don’t suffer alone because that makes it worse.

And, if you’re like me and you sometimes find it hard to start a conversation, write it down. Write a letter or an e-mail and send it to someone you trust, get those channels of communication flowing. I often find it easier to write a blog post, have my family and friends read it and then that starts up a conversation.

Our mental health can be affected by so many varying factors: stress, work, grief, loss, illness…the list goes on. There is no one size fits all solution. But what I can say is,  I have a lot of people in my immediate circle of friends and family who have had to deal with or are dealing with huge, life changing situations and they are still standing. Just about. And that’s because they’ve talked. They’ve not been forced to talk but they’ve talked when they’ve felt ready and more importantly they have been told that there are plenty of us ready and waiting to listen.

So much emphasis is placed on the person with the mental health issue but it’s important to remember that every single one of us needs to be aware too. All it takes is a simple, “how are you?” or “I’m thinking of you,” or “fancy a chat?” or “I’m here when you’re ready.” We all need to know who our “people” are. Sometimes we assume that people just know this, but occasionally, when you’re feeling that low and lonely, you just need to hear it or read it. Sometimes, it’s easier if someone reaches out to you rather than the other way around.

I’ve written about loneliness before. It can be all consuming. I would never have thought I could be lonely, I have so many wonderful friends and my family is incredible. I live with my parents yet some days, it feels like it’s just me. Just me, alone, with no hair and a life that doesn’t resemble anything that I recognise. So when my phone pings with a text just saying, “hey, how are you doing today?” it opens up a line of communication, a line to the outside world that allows me to participate. Allows me to be honest. Allows me to feel less alone.

Mental health is not linear. I cannot plot how I am going to feel from one hour to the next let alone day to day. But I also ensure that I keep in touch with the rest of the world too. I am not the only one with problems and issues. I am not the only one that can have a bad day. My bad days should not be given any more or any less importance in comparison to other peoples. Everything is relative. Even well people have crappy days where they need to vent and talk. We are all important.

But regardless of these good, bad and ugly days, what I do know, is that the world keeps turning. Days turn into nights that turn into new days. We have to keep putting one foot in front of the other. I was reading about loss and grief the other day and I read something that made an awful lot of sense to me. It said that when you experience loss or grief, that doesn’t go away. It doesn’t ease with time. You carry that loss and grief with you every single day but what does happen, is life starts to grow around it. You build memories and store happiness around that loss so that it becomes more bearable.  And I think that’s the important part – life.

So, if you don’t do anything else this evening, I would ask you to do two things:

  1. Text someone you haven’t heard from in a  while, or pick up the phone and give them a call. Ask how they are. Have a laugh and share a story about your day. Be present.
  2. Do something for you. The crossword, a sudoko, have a bath or read a chapter of your book. You are important.

And also, if you do know someone or if it’s you that needs some support, here are some places where you can find it:

The Samaritans UK (for everyone) 116 123

The Silver Line (for older/elderly people) 0800 4 70 80 90

Childline (for children and young people under 19) 0800 1111

Papyrus (for people under 35) 0800 068 41 41

Or visit http://www.mind.org.uk for many useful resources, support and help.

Happy Tuesday everyone.

 

#hairlesshannah

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An open letter to my GP

You have been my GP for over 25 years, you know me and my family well and have been there since the start of my illness in October 2015.

We haven’t had the smoothest relationship since my diagnosis of alopecia and ME/CFS, at one point you even rang me up to apologise about your conduct and approach to my condition. You apologised and promised that you would use my case as a learning curve so that any other patient that presented with my symptoms would not be treated the way I was.

After this, I didn’t see your for a while as I was seeing specialists and have been having CBT with the most wonderful, caring and understanding therapist I could have wished for. But, in seven sessions, my NHS input will finish and if I want to continue with CBT, which I do, I will have to pay for it privately. But, myself and my family also felt, in a way, that it’s the NHS washing their hands of me, abandoning me, because they don’t know enough about ME. So, that is why today, myself and my mum came back to you.

We accept that you won’t have all the answers or know everything about ME. As a teacher,  I never knew all the answers but if that was the case, I would research, refer and call specialists so that I could help and support the parents and children in their darkest hours of need to the best of my ability. I would never do what you did to me today.

Today, you sat in front of me and my mum and said that you had no time but that I had all the time on my hands to research, make phone calls, request tests and go privately.

Let that sink in for a minute. You have no time for me.

Now, let me ask you to digest this. Yes, I have time. But it is not my choice, it is not a holiday. I have a chronic, hidden illness that has robbed me and continues to rob me of my life. Myself and my parents have researched, spent money, done everything we can. Every test and specialist I have seen has been as a result of our suggestions to you. But today, we came to you because we needed help and support. We have hit a wall and needed suggestions of people, places, trials or just a simple offer of, “let me see what I can find out and I’ll get back to you.” Instead, you quite simply said you have no time.

Social media has given me a wealth of knowledge about my condition. I’ve heard about countless heartbreaking stories of suicide from patients who have received no help or support, who have simply been left to hope and deal with the cards they’ve been dealt. I’ve read of people no longer having the strength or support networks around them to keep fighting so just live with this illness, not having much of a life. I have never given up hope, yes, I’ve had my dark days, but I’ve always had the hope and belief that doctors and specialists would also not want a 31-year-old woman to just accept this is her life. But today, you changed this. Today, you knocked me down and I felt bereft.

At no point today did you show any empathy or understanding. You commented on my weight several times and yes, I know it is an issue – partly due to the ME, partly because of the drugs I’m on and partly because it’s been an issue for a while. You offered no suggestions of help or support, you asked if I was pushing myself to exercise, suggesting GET – by doing this you further emphasised your lack of knowledge of ME and your lack of bedside manner.

I ask, if you will, just for a minute to put yourself in my shoes and think, could you live like it for a day? Not just with the physical and hidden symptoms but with the loss of work, social life, income, and independence. And then consider how you’d feel after living that way for two and a half years.

I will pick myself up again, my family and friends will make sure of that. And we will keep on fighting. But as my dad said, we now know the NHS has abandoned us and we will have to go forward privately. You have no idea of how that feels, and I hope you nor anyone you know and love ever has to, because believe me, it is a horrendous prospect. It’s lonely and scary, it’s worrying and frustrating.

I would assume that like teachers, you have training each year to update your knowledge. May I suggest that you put forward ME/CFS as an area for all doctors at the practice to learn about, because the thought of another member of our community leaving their appointment feeling like I did today, leaves me heartbroken.

Yours sincerely,

Hannah

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What would you do if you were cured tomorrow?

Recently I replied to a tweet from @TomKindlon who posed the question: “What would you do if you were cured tomorrow?”

I answered quite quickly with the things that immediately sprung to mind, but I must admit, that question lingered with me and the more I’ve thought about it, the more things I’ve added to that list. It’s a hard one to contemplate because in reality, I am not going to wake up tomorrow cured. I am still ill, it is still on going, there is still no cure and the road ahead is still a long, frustrating, upsetting one. However, as with a good book or film, escapism from reality can be a release and I found it nice to dream for a while. So I thought I’d share with you my imagined “day in the life” if I woke up cured. (I’m also assuming that covers alopecia too and I’d have glorious locks again!)

I’d wake up in my own house/flat that I own because I can work full time again. I have a long shower where I’d use a hot oil treatment in my hair and luxuriate in shampoos and conditioners and revel in the fact I wouldn’t need a rest after my shower or at any point in my day until the evening! I’d style my hair, carefully apply make up, look at myself in the mirror and think, yes, today is a good day! I’d be able to choose a decent outfit because I would no longer be on tablets that caused weight gain and I’d be able to exercise because I don’t have pain or fatigue anymore to hold me back.

I’d then complete normal jobs around the house before jumping in my car, cranking up the radio and driving to meet friends for lunch…somewhere busy and social and with a beer garden so we can sit in the sun (Yes, I’m imagining Summer!) because I’m not longer sensitive to weather and I will tan and not burn!

I would then go to a travel agents and book a looooong, exciting holiday to places I can explore, meet new people and make memories. I won’t be worrying about money or being frivolous because I now cherish life, it’s not a rehearsal so work hard play hard has much more meaning. Following this I pop to the book shop to buy a real book because I can read again and I go home to sit in the sun, with a Kopperburg cider and read my book…it’s bliss.

As I sit in the garden, I don’t feel fatigued, I’m not worried about the brightness or the words blurring on the page. I don’t have to think about pacing or consider the guilt I feel for things I can’t do or contribute to because I am now able to contribute to society again. I can teach but also know that I don’t live to work. My health, family and friends are my priority and I will never again let work rule the roost. I reflect on how lucky I am to be surrounded by the people I have in my life, how they never gave up on me and how I know they never will.

I then go upstairs to have a bath because I recognise the importance of self care and quiet time. But also because I know that tonight I am hosting a party where everyone is coming round to eat, drink, play games and have a good time. Everything is organised and I’m not even thinking about the tidy up because I can manage it! I am grateful to be well, to be able to function as a normal human being and live a normal life doing all the things I love to do and after a brilliant music filled evening of taking silly photographs and laughing so hard your sides hurt, I climb into bed feeling exhausted. But good exhausted. Exhaustion that will be alleviated by the sleep I’m going to get.  It won’t take me hours to get to sleep and I won’t wake up a gazillion times because of pain, I will dream and wake up to another day.

One day….

#hairlesshannah

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Pet therapy

If you’d have told me this time last year that I would find pet therapy a huge help, I would have laughed in your face. We have never had pets because mum and I both have asthma and long-haired animals always used to make our breathing worse. However, last summer, mum and dad decided to sign up with a company called Barking Mad – quite appropriate for us! I categorically told them that that was their decision and the dogs would be their responsibility!!  I was very apprehensive about the idea. In case you don’t know, Barking Mad is a company that is an alternative to kennels when families go on holiday. “Host” families don’t incur any costs, in fact you get paid a small fee, the dog arrives with bedding, food, toys: everything it will need for its stay and then are collected when their holiday is finished!

Within hours I was in love with the first dog we had and then every dog that followed, bar one, become dogs that I fell in love with! I can’t explain it but I just feel so much calmer and more relaxed when they’re around. Stroking them and getting that unconditional love helps in a way that drugs and medication can’t. They are a distraction from the normal daily routine, they are fun and loving and I just love it when we have one to stay. The bit I didn’t account for is when they have to go home! It is SO tough to say goodbye but luckily we’ve had several returnees which is lovely because you know then and they remember you.

 

It is proven that having a pet lowers blood pressure, but more interestingly for me, they can cause endorphins to be released which are chemicals in the body that help to suppress our pain response. I can’t say I noticed a huge difference in my pain levels but they do distract me and take my mind away from the pain and discomfort which is good enough for me.

Each dog has been amazing for us as a family. Dad can often be found down on the floor playing with them regardless of the problems with his knees, depending on the dog, he is walking thousands of steps a day, mum has walked them and we are all noticeably calmer and happier when they’re around. It’s lovely. They bring big laughs as well that wouldn’t happen had they not been with us – for example, the night mum thought she was going to sit on our stool but actually fell into the dog’s bed and couldn’t get up because she was laughing so much! Lots of people have asked why we don’t just get our own dog but quite simply, they are a tie. Mum and dad are retired and want to go on holiday or have days out and having a dog means you have to plan around them and right now just isn’t the right time so Barking Mad suits them/us perfectly. But..I’m sure that one day they might get their own…I hope so anyway!

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Hope you all have a lovely weekend,

#hairlesshannah

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Health Update Time

The time has come to publish a blog that I’ve been writing gradually over the last three or so weeks. If you’ve been with my blog since the beginning you will know that writing has been an outlet for my emotions and has proven to be very therapeutic. However, it also lays me bare and it can be quite daunting knowing that my life is out there for the world and his wife to access and judge. That’s why I haven’t pressed publish on this post until now because it’s been a tricky few weeks and my writing is quite raw, but, it is my way of communicating so it seemed silly to write it and not share. I have no idea why but I find opening up verbally to the people I love really difficult. Not because they won’t listen, support and comfort, simply because I find it hard to put into words sometimes – odd when I can write without difficulty right?!

I’ll start from the beginning. A couple of Fridays ago Dad and I went to London to see Lumiere London. It’s something I’ve always wanted to go and see and take photos of and this year I felt strong enough to go and see some parts of it.  I cannot explain how wonderful those few hours in London were. Although cold, London was still. No wind, rain, it was at night so no sun…I was able to walk outside without intense pain on my head and face for the first time in well over a year and it felt liberating. So much so that I ignored all the other symptoms as they began to creep up – knees piercing, muscles contracting, headache niggling and fatigue enveloping me with each step. But I didn’t want it to end, I wanted a normal night and to enjoy the moment, a day or two pay back would be worth it for this moment.

 

Nah. My body was not happy with me. Saturday lulled me into a false sense of security as I woke up feeling not too dissimilar to when I over do things but by Saturday night I was in a world of pain and this continued day after day for almost nine days. This is often the case with ME, post exertion malaise will often only properly kick in until 24 hours after the activity. With this pay back came a world of grey and I couldn’t shift it. I couldn’t really focus on anything other than the pins and needles, the joint and muscle pain, the fatigue on top of fatigue and simply how low I felt. I was well aware that I wasn’t really talking to anyone, friends or mum and dad and I know how frustrating, irritating and annoying that must have been to live with but I couldn’t face it any other way. By talking I would cry and crying is exhausting and I literally didn’t have the space to exacerbate the hell I was experiencing. I wanted to be alone, in silence and darkness and to hibernate until it passed.

But for me, the hardest thing was a new symptom. Rage. Anger. I am not an angry person but honestly, I wanted to smash things. Break, punch, scream…I was so angry. Angry at myself because I hadn’t paced myself: I’d ignored all my CBT “training” and my body turned round and basically punished me for being so stupid. Then came the anger because I am done with this life I’m living in. For others I guess it’s easy to think I am doing well – I still smile, I’ve had a book published and I make cards and pom poms which is an improvement. I agree with that. BUT, and it’s a big but…I live every day at a level people take sick days for and when I push myself, what I experience is something most can’t contemplate because it’s hidden and it’s misunderstood. That place that I live in day-to-day is lonely and frustrating. I am not better, I am not well.

I did have a CBT session thankfully in which I cried…a lot…she knew something was up. And as always, she was fantastic at convincing me that I need to focus on the positive that I had such a lovely time in London and not to allow it to put me off doing it again because I need to throw caution to the wind sometimes and live. She explained it that if she, as a runner, suddenly went from running a mile and thinking she was doing well so went and ran a marathon the next day, her body would make her pay and that’s the equivalent of what I had done. And I get that, but as I said to her, what I did in London that night was a fraction of what I’d have done in my previous life and it just seems so cruel and unfair that this far down the line I still can’t.

I’m angry that the life I lead now when I have a good day, is like the couple of days after you recover from flu and think – phew I feel a bit more human today. We did laugh though when at one point she said – just tell me all the things you’re angry about, which I did and then added, “I hate that I’m making f**cking pom poms and I am capable of so much more!” It just sounded so juvenile and ungrateful that it jolted me a little. I love making crafts but I can’t make it into something I’d love to because I don’t have the brain or body capacity to, so when you break it down, I make pom poms when I used to teach and make a difference and I just feel like my brain and body is rotting and isn’t good for much.

It’s so hard accepting that you are experiencing a hellish few weeks but that when you feel “better” you will simply be back at the level that most people couldn’t cope with. I have forgotten what it feels like to wake up and feel refreshed from sleep, to have a day without pain, to wear make up or have hair, just to feel nice. It’s not a pleasant place to be and it’s a daily battle to keep taking steps forward and bury the negatives and focus on the positives.

I mean – I did warn you that this post is a brain dump of everything I’ve been feeling, it does seem over the top and desperate but I guess that is the truth of it at the moment. ME isn’t a straight path. You take a few steps forward and then from nowhere you are flung ten steps backwards. Being in such a dark place is scary which is why I am grateful for the antidepressants at the moment because I know I need them. It’s children’s mental health week this week and now, having lived with an illness that’s so hidden and misunderstood makes it so much more important to spread awareness for these types of illnesses because they can so easily be missed, misunderstood and belittled.

Thankfully, with the help of some puppy love, brownies and time, I am just about out the other side of the pay back from that Friday three weeks ago and I will now continue with my targets and pacing and claw back some of the steps I’ve taken backwards.

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Remember, be kind to everyone you see. You never know what they’re dealing with.

Happy Thursday.

#hairlesshannah

 

Lonely.

The definition of lonely in the dictionary is: ‘sad because one has no friends or company.’

I agree that this is one way of looking at the word however, it isn’t always as simple as that. I am sure the feeling of loneliness has affected most of us at one point or another in our lives but thankfully, I am also sure that the majority of people reading this are lucky enough to have a whole host of friends and family of whom they can call upon in times of need.

I started to really think about the state of being lonely a few weeks back because I did indeed feel very lonely and isolated. I count myself extremely lucky because I do have the most amazing group of friends and I live with my amazing family so the dictionary definition doesn’t fit in with my sense of loneliness. So how is it then that I go through extreme stages of feeling like I am totally alone?

I have always been very good in my own company. I can occupy myself and keep busy most of the time without giving it a second thought. I pop on some music or a film and can potter about quite happily without a second thought that I am ‘on my own.’  I lived on my own in the UK and in Dubai without giving it a second thought. Yet, I also absolutely adore human interaction and good company. I love a good catch up, bit of gossip, a debate, laugh or simply to sit in silence with someone close to enjoy TV or a film. I know some people aren’t like this, they can’t stand being in their own company or at least not for very long and I also know those who choose smaller amounts of time with people as they prefer the quiet life. There is no right or wrong, as individuals we all suit different lifestyles and ways of filling our time.

However, my circumstances have led to a real upheaval of my normal routine and therefore I have had much more time on my hands to be by myself and I can’t do many of the things I would usually do with this time because of my illness. Therefore, I spend many hours feeling isolated, frustrated and trapped. Although I have never had one day by myself since coming home two years ago, I have discovered that it is totally reasonable to feel lonely even though you’re surrounded by people – a crazy concept I know!

This isn’t a ‘woe is me’ post, more a mind dump of thoughts I’ve been having of late and a way of reasoning with my feelings. One is of course the circumstance I find myself in compared to that I wish I wish in. I don’t have a partner, I am a single pringle who is in no position to contemplate or entertain the idea of dating or finding someone. Therefore, that results in not having that one person to lean on, confide in, share with and look after. I love a cuddle but I can, at times, go days without any human contact physically. That is sometimes my own doing because I know if I am touched I will crumble and I don’t always want that!  Of course I have the emotional support from my family on a daily basis, but ultimately, when I go upstairs and close that door, I am alone. Just me. Just me and my thoughts. And although sometimes this is all I want, it’s where I can just focus on what I need, it can also be a danger zone because being alone can become quite a dark place at times.

During the last month I have made a choice of being alone most of the time. I haven’t been in a good head space and haven’t wanted interaction and when I have, I’ve found that the smallest of things will irritate or upset me. I’ve just wanted peace and quiet, low lighting and comfy surroundings to ease the symptoms that have become so acute. This is most definitely a double-edged sword because although it’s what I have wanted, it hasn’t necessarily helped. Being around people and socialising, although exhausting, lifts my mood and occupies me. I’ve noticeably not reached out to people for company like I normally would and I am now consciously making more of an effort because I know that friendships are two-way and I can’y always rely on others to organise, I need to meet them half way. That’s where CBT is helping because I can pace myself in terms of self-care and preservation alongside seeing people and doing nice things to keep me going.

Lonely is a tough place to be. You can’t always see a way out of it but there are always options – texts, phone calls, Skype, arranging catch ups or simply making links within communities on social media with people who understand what you’re experiencing. This is one that I find most helpful at times because one cause of my loneliness is the feeling that people don’t truly understand and ‘get’ what I’m going through on a daily basis. It’s through no fault of anyone, life has to go on, but at the moment I simply can’t shake this overwhelming sense of feeling trapped by my mind and body. For the first time in months I gave up the other day. I uttered the words, “I can’t.” I’d gone with mum and dad for a little walk at High Elms, it wasn’t sunny so my pins and needles shouldn’t have been too much of an issue – but storm Brian had other ideas and set about sending strong gusts of wind. The only way I can describe it was that the pins and needles were lodged in my face and head, and every time the wind blew against me, it pushed those bloody things in and out of face and head like they were drilling tiny holes. It was so painful and for once, I couldn’t ignore them, so I went back and took shelter in the car. I didn’t cry, I didn’t get upset, I just felt anger. Like so many times at the moment, I wanted to scream, to shout and to vent the frustration that courses through my body several times a day. I hate this life, I hate my body and I hate that at the moment, my mind won’t let me push these thoughts away.

ME is a lonely illness, it is isolating, it is frustrating and it is a place where you spend a lot of time alone. I’m okay with that most of the time, I’m becoming more accepting of it because really, there’s no other way I can be because there is no fix for it. I don’t always want to talk about how I feel or what I’m thinking, I don’t want to discuss the pain or frustration but that equals an even more lonely feeling because I can’t share it with anyone, I only burden myself and that is tough. I just have to remind myself that although I spend much of my time by myself or with the same four people I share a house with, I am not alone.  I will never be alone and I should be grateful for that. There is always someone who will listen, whether that be someone you know or a stranger you can connect with. We must take advantage of the positives that living in this social media driven world provides us with and I can’t recommend it enough.

So, please, if you’re feeling lonely today, reach out, talk, share and know, you are not alone in whatever you are going through so don’t be afraid to talk.

Be kind to yourself.

Happy Tuesday,

#hairlesshannah

 

 

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Me, ME & CBT

On September 21st, we were made aware that Radio 4 would be doing a phone in all about ME/CFS. So, mum, dad and I sat in the kitchen and listened in and I have to say, my reaction was not necessarily what I was expecting.

I assumed that the show was probably picking up on the fact that there has been quite a bit of press attention towards ME/CFS recently because NICE have ordered a review of the “treatments” available. Because of research I have done, I was aware that there are many people who suffer with ME, around 200,00 in the UK and there are only two therapies recommended by the NHS- GET (graded exercise therapy) and CBT (cognitive behaviour therapy.)

The phone in involved many people contacting Radio 4 and giving their experiences of ME and talking about the support and treatments they have tried or been recommended. And that’s where I was astounded, the sheer quantity of people they had contacted them was overwhelming and each person they spoke to or read out an e-mail from was so devastatingly sad, hopeless and in many ways negative. Yes, in some ways I found it encouraging that it’s not just me that has experienced the lack of knowledge around the illness from health professionals, that treatment options are sparse and that language used towards us is often belittling and derogatory. That I am not the only one suffering the way I do on a daily basis and feeling like they’re getting nowhere.

But what I found most frustrating was the views they put across about GET and CBT. Now, I am not a specialist on this and would never claim to be. Everyone’s experiences will differ and depending on the outcomes of said treatments, people will have different opinions on their worth. I am well aware there is no “cure,” and I know that there are many differing levels of suffering with ME and that I am by no means at the severe end of the scale. But that’s what’s tough, my level of suffering is bad enough so to imagine it being worse is unthinkable.

I won’t be commenting on GET as I haven’t any experience of it but as you may know if you have read my previous blogs, I have been given a course of CBT on the NHS. Even though I had heard some negative connotations around it, I really am a – ‘anything is worth a try’ kinda gal so purposefully didn’t do too much research as I wanted to go in with an open mind.  Therefore to listen to so many people’s stories of how it hasn’t worked for them, made them worse etc made me fearful for those who have been offered CBT and haven’t yet started.

I am ten sessions in and am still totally undecided on how I feel about it. It’s hard. It’s emotional and in some ways I have had to take steps backwards BUT I can see the reason why it is suggested as something to support ME sufferers. It has not made me better but it has helped me to “cope” a little more and supported me in terms of learning how to pace myself properly – before was all guess-work and I didn’t know what was best. I am lucky that I immediately hit it off with my therapist. I like her but more importantly, I trust her. She hasn’t once fed me the optimistic bs that so many doctors and specialists have over the past two years, she hasn’t guestimated how long it may take to make improvements and she hasn’t once made me feel stupid or that it’s all in my head.

My mind is still divided and in some ways uncertain as to some of the things we do – sometimes I think if I have to fill in one more bloody diary sheet I might scream!! I am not for one minute saying no one should be negative about CBT because believe me, I’ve had my moments. It isn’t a cure but you know what, if it’s the only thing that can be offered to me then I’d be silly to not give it my all and put my trust in her.

I spent the entirety of my last session talking to her about the Radio 4 programme. She hadn’t heard it but was interested in my thoughts and feelings. I admitted it had made me doubt the CBT process and feel terribly upset and worried that if it doesn’t help me, there aren’t any other options and it had made me feel hopeless. I also expressed my deep sadness for those about to start CBT or those who are only a few sessions in who may have tuned into the programme. At that stage you are so vulnerable and it could totally tip you over into the frame of mind to approach CBT negatively from the start and that surely leaves you in a worse off position than going in open-minded?

I explained how I worried that our sessions were very much based around unhelpful thinking patterns and that although I understood that helps my mental state, ME isn’t a psychological illness, it isn’t in my mind and that made me sad to think that is how I was potentially being viewed – as nuts. Or as it was expressed on the show, an over emotional female who can’t cope!

My therapist then took time to explain how she 100% knew that ME was not a psychological illness. How she’d worked with people who were bed bound, had seen the pain and other obstacles that her patients have to deal with first hand and that she would never want me to think that she thought of me as mad!  Once again she reiterated that she could make no promises with my recovery but that everything we do is with the aim to improve upon the way I live my life day-to-day right now. And that may be simply by increasing my daily activity by five minutes and she would be excited by that. Then we discusses my brain – a scary thing I can tell you! There is so much in the press about mental health which is so brilliant and she explained that although ME most certainly is a physical illness, the psychological fall out is just as real. The impact that ME has on your life is beyond explaining, I still struggle to fully explain the pain and frustration that lies behind my smile and the tears that are always ready to pour – to most it either looks like I’m fine or on the flip side that I’m in a mood (sometimes that’s true but mostly I cope by either smiling or being quiet because words just aren’t enough.)

I am slowly learning that my brain is just as in need of treatment as any other part of my body. If my arm broke, I’d get a cast, if my eye sight starts to go, I’d get glasses, if I hurt my back, I’d get physio. So when my mind is put under stress and strain, why shouldn’t I seek help through therapy? And there in lies the beauty of CBT. I can talk to someone who knows ME like the back of her hand, I’m not saying they all do, but luckily, my therapist is first class. She understands my symptoms and she helps me, asks me what I want to talk about, what I want to aim for, what my ultimate hope is for my illness and the treatment and slowly, gradually we work together to try to aim for that.

We make and monitor targets. I needed to know if and when I should push myself. I have totally reverted to being a teenager again and feel terrible guilt if I don’t achieve my targets or have to turn up saying, “Sorry, I didn’t do my diaries this week because, well, I wasn’t in the right frame of mind.” It’s awful, I feel like I’m going to get detention! But that’s something to work on because as you may have guessed, she doesn’t get mad, she doesn’t berate me. She tells me I know my body and mind the best. I know when I can push myself to achieve those targets we set, there is no point adjusting them or pushing for them if they will make it harder than it already is on a daily basis. Now that doesn’t mean she doesn’t push me to some extent but she pushes me within or jsut slightly beyond my limits and always does so with care and consideration. She is always at the end of an e-mail and replies quick as a flash and has supported me in so many other ways outside of the therapy room, in ways no one else has done before. I tell you, this woman really is top class.

It’s hard to see any progress, it’s like looking for a needle in a haystack sometimes and I know I get blindsided by time and milestones i.e. it’s nearly two years since I’ve been home and I feel just as stuck and possibly even sadder than I did back then. But at the end of the last session, she sensed that the Radio 4 programme had popped a seed of doubt into my mind so we got out my targets and charts from when I first met with her.

Over ten sessions (24 weeks) I have upped my daily activity by 20 minutes, this doesn’t seem by much but when most of the activities I do link to crafts – using scissors and using my hands, well, that hurts quite considerably so, yeah – 20 minutes is a lot!  I have reduced my daily sleep allowance to 2 hours (not achieved on many days, but on more than not) and when I achieve my ‘get out of the house daily’ (not met on 6/7 days this week, hangs head in shame) I can walk for 15 minutes without needing to stop or get home. I have also started to drive once a week, 5 minutes down the road to get to my reflexology sessions which is the biggest thing for me because I feel like that gives me some independence. I find it daunting and scary because I haven’t driven for so long and I am very aware of my capabilities or lack of them!

So, in actual fact, I have made progress. Yes, I may have achieved these without CBT but I reckon, for me, it would have taken a lot longer because I wouldn’t have known the best way, the safest way, the way which would help me most.

As I said at the beginning, this is my own personal experience and I know not everyone will be as lucky as me to have a therapist so experienced and so wonderful. But I guess what I’m trying to say is, if you haven’t started CBT yet or are nervous to, try not to be. Everyone’s experiences are different. It’s important to be honest, yes, and it’s brilliant to take advantage of that online community because you get so much support through it and learn a lot, however, as we know all too well, online communities can also have a flip side. It’s a safe place to moan and vent, I’ve done it! But that doesn’t mean it should cloud your experience. In the week between listening to the show and seeing my therapist I spent a lot of time online looking into others experiences with CBT and honestly, I only found one or two positive ones. I then felt bad, guilty almost that in some ways I am finding comfort from it. I’m not stupid, I know it won’t cure me, but I am realistic in that it helps me and I’m okay with that, it’s the closest I’ve got so far with any kind of proper help.

So accept those NHS sessions if you’re lucky enough, like me, to be offered them. And if like me, you weren’t aware that you could get access to sessions on the NHS, ask about them, request them, because who knows, you might actually find some benefit from it like I have. I certainly hope so anyway. This blog all began because I wanted share my experiences with alopeica but I think it is so important to share the good alongside the bad. Sharing positive experiences is so important, so please, if you’ve had a positive experience of CBT, let me know, comment below or send me a message, I’d love to hear about it.

Have a good Friday and a lovely weekend,

#hairlesshannah