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

 

Learning to let go…

Firstly, I’m sorry I’ve been MIA on my blog, no real reason, just life. But today I felt the urge to write again, it’s my go to self help and therapy when I need it to be I suppose.

I’m writing in a new space today though, in my flat. In my very empty shell of a flat whilst a man is cleaning my oven..I joke not! It’s a very surreal time. I have convinced myself of all the reasons why I’m having to sell and the positives that come with it but at the same time, I am unfathomably sad about it all.

I bought this flat almost eight years ago. I worked hard for it and the sense of achievement I got when I moved in was huge. It marked a point in my life when I was secure enough to be able to move forward from the after effects of jury service and live alone, move forward, be independent. It was exciting, a new chapter, something for me to be proud of and it was the best feeling ever.

This flat has seen some brilliant times – Halloween parties, birthdays, gatherings for all occasions, any excuse really. It’s seen two eventful room renters for which many stories can be told and endless hours of DIY for my dad! It’s been a safe haven, my own space and I truly have been so lucky to call this place my first independent home. For any other single pringles out there, you’ll totally get the hardship that comes with being a singleton trying to get onto the housing ladder– it’s bloody tough when you’re on your own and that’s what made finally getting my flat such an achievement.

My flat is the last thing I was clinging on to for dear life, my aim to get better and be able to live here again. But sadly, for powers totally out of my control, that can’t happen and the choice and dream has been taken out of my hands. I know that one day I will be able to start afresh somewhere new, I know once it’s sold it will be a stress removed from my shoulders however, I think it just highlights the unfairness of my situation and demonstrates once more what ME robs from people.

By selling my home, that’s the last thing that essentially makes the life I made for myself, gone. I’m no longer a teacher, a traveller, a home owner. I’m back to square one and regardless of how I try and put a positive spin on things, it hurts and it feels like one more thing to mourn. And I won’t dwell on it too much because it won’t change the situation or do me any good, but I am allowing myself a little time to process and get it out of my system I suppose. Then, I’ll toast the good times and look forward to the next chapter as and when it comes.

I go through phases where I am totally in control of life and my mental and emotional well being and then, like most things that seem to happen to me, a lot happens all at once and I can’t keep things in check. I guess with hope there’s always the danger of it being dashed. That’s why I don’t hope for too much at once and take the little things as and when I can. ME is just such a random, uncertain illness – there’s almost no point in saying, this time next year you’ll be able to do XYZ, because you just don’t know. I might be able to do XYZ in six months but equally it might take another two years. I’m learning to accept it more and am trying to be at peace with it because like I said before, I can’t do anything about it, but what I can’t silence in my mind is how much I hate it. I really do hate it. It has stolen so much from me, I’m not in control, I miss my independence, my life before.

But, life goes on and I do believe things happen for a reason, (if anyone would like to shed some light on this, I’d love to hear it!) so, for now, I’ll enjoy the fact that a man is cleaning my oven and that I don’t have to do it or ask my parents to, I’ll sit here and quietly remember the fun this place has seen and dare to dream a little about what lies ahead.

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I hope you’ve all had a lovely weekend and are still enjoying this freakishly long sunny UK Summer!

#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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Lessons & goals

I turn 32 tomorrow so I thought I would document my lesson learned from my 31st year.

This month marks a year since starting CBT. I was so apprehensive, cautious and dubious about starting because I’d read so many controversial things about it. And there lies lesson number one: don’t judge things based on others opinions. For me, I fell on my feet with my therapist, she is the best. Her knowledge of ME and her approach to how CBT is used is amazing. There is no pressure, major target setting or trying to push me. It’s been more about helping me learn how to cope, helping me deal with how hard it’s been on my mental state and gradually helping me to build in activity, manage my sleep and focus on the good.

Lesson two: social media has so many more positives than negatives. I have made some truly wonderful friendships online this year through Instagram. All of whom live with ME or other chronic illnesses. It’s a comfort to talk to people who truly get it, share our days, struggles, highs and lows but also have people to turn to, to ask questions.  Social media is often shown in such a negative light but for me it has mainly given me positives. That online network is a life saver for so many and I love the way it makes you feel less alone in times when it feels like you are.

I actually started a little hashtag a few months back #truthfultuesday where people who live with hidden illnesses can be one and honest about their days. We often hide away the truth of our days from social media as many of us like to keep social media a positive place but I thought it was important to also be honest about the reality of living with our illnesses. It has been so lovely to read about people’s daily lives – the good, the bad and the ugly and raise awareness through this hash tag. I hope people will continue to use it, especially this month as it’s ME awareness month.

Lesson three: I am more stubborn than I realised! On reflection I have noticed a pattern running through my life. I don’t give in easily. If I see or experience injustice, I can’t simply push it to one side, I have to try to find a way of turning a negative into a positive, to ensure others don’t experience what I have. This year it seems it’s been about  my GP. I know my energy would be better spent on focusing on treatments and unexplored options but first I need to do my best to ensure she knows the damage she and other ignorant GPs cause to those living with hidden illnesses. I am also aware that I need to learn to experience such things and be able to move on without the fight. That’s a goal for my 32nd year!

Lesson four: despite what the quotes say, sometimes it’s okay to just have a crap day and not be able to find any positives! As long as those crap days don’t turn into crap weeks and months then you’re allowed to just have bad days. I still firmly believe in trying to find positives in each day, I use my Dawn French diary as a place to write down 3 good things in every day and sometimes that’s really tough. But then I think – I have a roof over my head, I have wonderful friends and family and there’s always a good home cooked dinner!

And then I find myself thinking about the year ahead and I’ve made some little goals for myself.

Goal one: learn to start conversations to talk about how I am feeling when I’m not having a good day. I can open a lap top and easily write a blog post but for some reason I struggle big time to start a conversation to get things off my chest. No matter how much I know it will help me, it’s something I find really hard, like I’m afraid if the tears that will fall but that’s stupid so, this year I will try harder.

Goal two: continue to focus on my CBT targets and mental health and focus on the small steps forward rather than the steps backwards.

Goal three: Reduce my time catastrophising and mind reading. These are two thinking patterns that have been uncovered through CBT that I do A LOT! If something happens i tend to catastrophise, think of all the worst possible outcomes, rather than taking a step back and being slightly more rational about things. I also mind read a lot.  I guess what people might be thinking about me, what they might be saying behind my back…and where does that get me? Nowhere. It’s a pointless thing to do so I am going to try to eradicate that and if I’m worried, I will talk and ask questions and move on.

Goal four: plan and book in more fun things to do. I am now so frightened of pushing myself and doing things slightly out of routine that I have just simply stopped doing them. Regardless of what hand you’re dealt, you really do only get one shot at life so I am going to do some more fun things this year. Yes, I will pay for it, yes I will be in pain but then..maybe I won’t be. I’ll never know if I don’t try right?! I’ll aim for one bigger thing/event every couple of months and see how I go, with things in place to help and many days of good pacing surrounding it…no guilt here for telling you what I do, that’s something else I’m going to stop doing. If people look at me doing such things and judge me and doubt me, they aren’t worth my time. Out of my circle they go!

So that’s four lessons and four goals – I had more but I’ve run out of steam and the screen is hurting my eyes sooo self-care is kicking in! I hope you all had lovely bank holidays and have a fab rest of the week.

Happy Tuesday.

#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