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

My spoonie survival kit!

One of the questions I am often asked is what things help me on a day-to-day basis, things that ease the symptoms of ME. Obviously this will differ from person to person but I thought some might find it interesting or helpful to see what helps me, so here is my ultimate list for my spoonie survival kit!

What I always carry in my bag

I have never been one to pack light, even in my days pre ME! In the sixth form I was awarded the medal for being ‘mummy’ as I could pretty much always provide what anyone needed, from a tissue to a paracetamol, polo to a nail file! You will very rarely see me with a small bag as it just simply wouldn’t cut the mustard (where does that saying come from?!) in order to accommodate my needs!

  1. My polarised sunglasses. These were an expensive purchase when I lived in Dubai but my goodness have they been a life saver since being diagnosed. My light sensitivity is really bad and the difference between wearing normal sunglasses and my polarised ones has been incredible.
  2. Ear plugs. As I’ve mentioned before, noise sensitivity has also remained a real issue for me. As soon as I go somewhere that is more crowded I need these bad boys to keep my head from exploding. At home we can monitor and adjust the noise level but that’s not so easy if I venture out for a meal or to walk around a shop!
  3. Polos and rescue remedy. These two have featured in my bag essentials for a while now. Since suffering with panic attacks, these two things are my go to life lines. Bach’s rescue remedy I find really calming and helpful and as for polos, I’m not overly sure apart from a previous CBT therapist explained it may be because I can focus on a different sense which distracts me from my anxiety – who knows, all I’m bothered about is that they help when my anxiety rises!
  4. My little medication purse. One of my anxieties is that I could be somewhere and not have the thing I need to make me feel better so I have a medication bag! The essentials are: travel sickness pills, Imodium, paracetamol, Paramol, anti-histamine, inhaler, antiseptic hand gel, hand cream and throat sweets.
  5. Bottle of water. One of the side effects of some of the drugs I’m on is a very dry mouth but also, water is always good incase I need to take tablets or have a hot flush!
  6. Eye drops. Since losing my eyelashes I’ve noticed that my eyes are more susceptible to getting dry, itchy and getting dust etc in them. Eye drops are just a useful things to have at hand for those irritating moments.

 

At home survival essentials

  1. Electric blanket. Honestly, this bad boy is slowly becoming my new best friend! I haven’t had it on during the Summer but popped it back on my bed about three weeks ago and oh my, I had forgotten the benefits it provides. The difference in my restless and painful legs is definitely aided by this hot piece of material and I have found that the sleep I do manage to get seems to be of a better quality.
  2. My pregnancy pillow! Again, it provides me and my painful limbs with the much-needed support they crave. I am so much more comfortable lying down with this wrapped around me – who needs a man eh?!
  3. My diary. I’ve kept a diary every day since I was 11 but it really has been an essential for me as it’s a way of venting every day and getting my emotions out. I still find talking tough so this is my way of getting my thoughts and feelings out of my system before I go to sleep. Again, this helps me to go to bed with all those heavy thoughts weighing me down.
  4. Bath range! I love me a bath! Any Lush bath bomb will suffice but I absolutely adore the Marks and Spencers Sleep range. A friend got me them for my birthday – all lavender based, not overpowering, just right. A shower gel, foot cream, hand cream, body lotion and pillow spray, all amazing products although I am also partial to the Lush cream called Sleepy. There’s been a lot of press around lately about how it’s a miracle cure for insomnia…it hasn’t done that for me at all but I do love the smell and it definitely is a calming scent.
  5. Dimmer lights and subtitles! Yep, I am a granny…these link to light and noise sensitivity but there are always options to make life bearable.

 

So there you have it, my list of goodies that I use everyday to help me – if you have any to add to it, please comment and let me know.

Hope you’re having a lovely week,

#hairlesshannah

Taking the positives from the negatives

I’ve been “training my brain” of late to focus on the positive things that happen day-to-day rather than dwelling on the negatives. Without thinking about it, we do tend to talk about the negative things that happen rather than all the good things – whether that’s for fear of irritating people with your happiness or for me, fear of people thinking that that means I am ‘a-okay.’ It’s true of many aspects of life – we talk more about our problems and issues relating to work, relationships, friendships etc rather than regaling in the things that are making us happy. Yes, of course we DO talk about the good, happy things but they tend to come after the things we need to get of our chest.

Typical conversation you may be involved in or overhear:

“Oh hi, so lovely to see you, how are you?”

“Oh, you know, I’m ok but my damn hips are causing me jip and my sleep is all over the place which means the kids are driving me insane and everything that *Rupert* says or does makes me want to scream!.”

“Oh I know exactly what you mean, I’m the same. There aren’t enough hours in the day to get everything done for everyone else, there’s never anytime for me and when there is it’s always interrupted.”

WHY DO WE DO THIS? Don’t get me wrong, I totally fall into this category a lot but I do try to make a conscious effort to not be like this because it’s something that drives me insane. Negativity breeds negativity and that is only going to make you feel worse. I am hands up a total advocate of talking and moaning every once in a while, after all it’s something us women would all get an A* in and that’s why we aren’t all totally insane because it’s a way to work through things. What I’m really talking about here is how important it is to always try and see the positives in things, I truly believe, no matter what situation you are in, there is always something you can take from it. You may not see it, or want to see it at the time but if you look closely enough, you’ll find it.

I’m going through a patch at the moment where I feel CBT is nonsense and a waste of my time. I seem to be coming across every single bad report or experience people have had about how it doesn’t help ME sufferers, I’m not looking for them, they just find me on the internet.  Therefore this influenced me for a few days with me thinking, see, you’re right Hannah – it’s rubbish. But then I pop my level head on and think about my thoughts and realise that actually it’s not that it isn’t working, it’s just that I’m not giving it my all because I’m scared that it might not work. How ridiculous is that?! It will be a hard slog, it will take time to notice a difference and that’s okay, no one built Rome in a day.

So, over the last week or so I’ve started to consciously think about the positives that have come from the last two years and I have been totally flabbergasted by how many I could come up with. I didn’t honestly think I’d come up with many because I am so aware of how many negatives I’ve taken from it and how it’s impacted my life in a bad way, so to turn it on its head and look at it from a different view has been liberating. If I come up with a positive I can often follow it with something negative because I worry about others i.e. the strain it must put on my family for having me home for so long BUT in this blog I’m not going to mention anything negative…so here goes!

  1. Spending time with my family that I wouldn’t have done before. Being back at home with mum, dad and Jack has been lovely. Going back in time almost to all being round the dinner table chatting, laughing, debating – I can’t explain how much I will treasure that. Little trips out, celebrating birthdays together – I love it. We are so lucky that we are such a close family and although we drive eachother nuts at times, we love eachother and would do anything at any time for one another and that’s very special.
  2. Being at home whilst Jack trained and became a fully fledged teacher. Being able to offer help, advice and support (which mainly was received well!) has been amazing. I would of course have been involved anyway but nowhere near to the extent I’ve been able to and as always, it’s just made me so proud of him.
  3. Being around to watch my friends have babies, getting engaged, moving homes and entering the next stages of their lives; you can’t put a price on that.
  4. Discovering my love of writing. My blog has been a saviour for me and I wouldn’t have discovered that without this situation I find myself in. Writing manuscripts for books and finding out about the publishing world has been so exciting, as cheesy as it sounds, it’s been a dream come true.
  5. Having the time to spend on my other interests like baking and crafts and developing a little business (website to follow soon – eek!). Again, something I’d never have had time for in teaching.
  6. Having time to spend with people I possibly wouldn’t have before and realising just how lucky I am to be surrounded by people who are so talented and are willing to use their talents and time in order to help and support me.
  7. Realising that actually, you really do work to live and not live to work. Many things have been put into perspective for me, the stress and time I put into my job – something I don’t regret because I love teaching and care so much for the children but at times this has been to my own detriment and ultimately, it’s not worth it. Recognising that sometimes you have to put yourself first has been a hard one to get my head around but I’m working on it.
  8. I’ve had a lot of time to think about how society works and how I feel and react to certain aspects of life. I’ve always tried to see things from different perspectives but now that I’ve been in a minority group by not having hair, I’ve been able to see how cruel people can be and in turn it’s made me more empathetic and aware of people’s feelings.
  9. Just because you’re having a bad day doesn’t mean you’ve got a bad life. This has been a revelation for me recently. I’ve had days where I have genuinely convinced myself that I 100% hate my life and hate isn’t a word I’d use lightly. I looked back in my diaries yesterday and I have written this soooo many times. But actually, I don’t. How could I when I’m surrounded by so many wonderful people and can still do so many things? My life has changed dramatically and isn’t what it used to be by any stretch of the imagination but I have to learn that that’s alright. My cousin in Canada came up with such a wonderful idea at the start of the year, to keep a note of something good that had happened every day that made us smile or lifted our spirits and at the end of each month we swap our mini diaries so we can keep up to date with each other’s lives. I have loved it – we are much closer because of it and it really does mean that before you go to sleep you are (hopefully) focused on something good rather than bad.
  10. I’ve discovered audio books and podcasts – small but significant discoveries!
  11. I’ve actually…wait for it…become a bit of a dog person! Mum and dad signing up to Barking Mad was something I was SO nervous about because we’ve never had pets and I have always been wary of dogs but wow – I now understand how incredible pet therapy is. The calming influence they have has made such a difference to me and I miss them when we don’t have one – I haven’t gone so far as picking up poo yet but you never know!
  12. *cheesy point alert* The world we live in is so beautiful. I have always appreciated nature but on a low-level but when you’re stuck inside a lot of the time, you really get the time to look at things. The clouds, the seasons, plants, flowers…I guess I just appreciate it all more and I have loved spending time with Dad being geeks and learning about photography and capturing those things that weren’t necessarily on my radar before.

And there you have it, my positives from my negative – not too shabby if you ask me. I wonder what you would come up with if you spent some time thinking about it. That’s your challenge, next time you see someone and they ask how you are – start with a positive response and move on to the less positive later on, it honestly makes such a difference. And anyway, if you leave the moans and groans until a bit later, chances are the kettle will have boiled and biscuits will be out and we all know a moan and groan is made better with biscuits and a cuppa…or in my case a Ribena!

#hairlesshannah

PS: September is coming round again so get those fun hats back out and let’s raise some more awareness!

Dream a little dream

If you take time to stop and think about how your brain controls everything you do, how it generates your thoughts and how it governs our emotions, thoughts, actions…basically everything we do, it can become quite overwhelming.

I am learning that my brain is quite an interesting little fella! It generates thoughts and worries that I can’t control – it’s like a beast that is refusing to be tamed! However, I am trying and through the help of CBT, I’m sure I will whip it into shape. I have found it so interesting dissecting my thoughts and learning about the influences that impact me and therefore enable my unhelpful thinking patterns. We/I often react to a situation by responding to how it makes me/us feel and that then leads to me/us behaving in certain ways and reacting to it on a physical level i.e. something has made me/us feel stressed so in my case, I can’t sleep and this leads to me feeling fatigued.

So if I try to consciously think about something it might start to change my behaviour, emotions and reactions which will mean that my physical and emotional responses will also change. The way it is described in the book I am reading sums it all up perfectly; The way we think about something will determine how we feel, and the way we feel will often determine what we do.  (‘Overcoming chronic fatigue’ by Mary Burgess.)

It is a really tough thing to unpick. I am keeping an unhelpful though pattern log at the moment where I have to dissect my thoughts. Thinking about the various aspects of that single thought is hard. Seeing things broken down and written in black and white really brings home the truth behind how I’m feeling and how it is impacting me on a daily basis. However, even though it’s a hard process, it is helping me to challenge the way I react and respond to my thoughts/worries. Don’t get me wrong, at the moment it really isn’t changing the way I respond to certain things but it is in the front of my mind and I am noticing how after I have these thoughts, I dissect them a little and challenge them and it helps me to box them up and shelve them rather than dwell as much as I have been.

Our brains are such intricate organs and one that I will never fully understand! Sleep is still a bloody nightmare for me at the moment. I simply cannot fathom how someone who is SO fatigued just can’t sleep. Over the last three weeks the most sleep I’ve had in a 24 hour period of 5.5 hours. I am sticking to my CBT targets and setting an alarm in the day for a maximum 2 hour nap although I could sleep longer – why is that?! Why could I sleep in the day with no issue yet when it comes to night-time, I just can’t get to sleep? And when I do, I will wake up every 30 minutes to an hour and then remain awake for anything up to two hours?! I just don’t understand and although I know so many ME sufferers have this problem – insomnia and painsomnia – I can’t find any research or explanation for it?

I have always been a vivid dreamer – always in colour and I can often wake up remembering them. But over the last few months – really starting when I was taking melatonin – my dreams have become stunningly vivid. I have a least one dream that I wake up from a night that feels like real life and affects me on an emotional and physical level. Some are totally bizarre although I can relate them to something I may have watched on TV or read about but some are quite clearly linked to my subconscious and they are the ones that are having the biggest impact on me. They are so cruel, it’s like my brain is torturing me on yet another level and although the dreams are wonderful to “live” through at the time, they are a flippin’ hateful things to wake up from because I come back down to Earth with an almighty thwack!

I’ll give you some examples! Here are two of my more bizarre dreams of late!

  1. I was the right hand lady to the President of the United States who just happened to be Denzel Washington – I do love that man! He was in terrible danger and I had to defend him Jack Bauer style and I have to say, I was kick ass! The dream ended with him shaking my hand and thanking me and I replied, “It has been an honour Sir.” Ha ha ha I mean, this is obviously a dream concocted by someone who loves ’24’ and would love to be a real life super hero!
  2.  Tom Jones was my friend and he was about to do a concert but had very swiftly been struck with dementia so couldn’t remember any of his song lyrics! Mum was hysterically upset because no-one would ever get to watch the genius of Tom in concert again and the dream ended with me trying to find a cure for dementia.

And then we come onto my more upsetting dreams to wake from!

  1. The marriage dream. I’ve had several dreams where I am either getting ready for my wedding day or living my wedding day. I can never see the face of the man but I just know I can feel how happy I am. The dress, flowers, party – everything – is always beautiful and the happiness overwhelming.
  2. The engagement dream. Again, where I can literally feel how happy I am and how in love and the dream is based around telling people we are engaged and it’s all jolly and wonderful!
  3. The baby dream. I am either pregnant or have a little baby and again, totally in love and totally happy. The most recent and interesting dream linked to this is one I had last week; I was a single mum, pregnant and had consciously decided to use a sperm donor because I hadn’t found the right man but knew I wanted to be a mum! I had a C-Section and had a little girl!

These dreams are tough ones because they are all linked to my real life dreams – I would love to be in a happy relationship and have my own family unit and if any of you know me, I have always wanted to be a mum. These are all things that for now, are way out of my reach and are pipe dreams quite literally. So to wake up feeling so deeply the happiness and love and then realise it isn’t true is hard and it takes me a while to shake it and separate it from my actual reality.

I love a good dream and what I am trying to say here is how powerful our brains are. Even in our sleep they manage to formulate our conscious and sub-conscious thoughts, hopes and wishes and bring them to life. It brings me back to the fact that our brains are equally a part of our body as a leg or arm and need to be cared for in the same way. We may not be able to see the hurt and damage that our brains are dealing with but that doesn’t mean that it’s any lesser than anything else that needs care and attention.

So, as always, remember that not everyone’s demons are visible, they can’t be fixed quickly, people can’t just snap out of it and all they need is a shoulder to cry on, a listening ear and a good old laugh.

Happy Friday everyone.

#hairlesshannah

Worry less, smile more

.Wouldn’t it be amazing if there was an off switch for all our worries? If you’re like me you will love a good quote and many a good quote base themselves around being positive, living your life to the full, worrying less and smiling more. But sometimes it doesn’t matter how much we try to convince ourselves of this, worries just can’t be magicked away that easily.

One of my targets from CBT has been to write in a worry diary every night, 3-4 hours before sleep, the aim being to oust the worries from my mind, write down steps I can take to begin to overcome them, close the book and hopefully that’s expelled them or at least calmed them from my mind for the night to come. I get the concept, I really do, but in some ways I’ve found that all this has done is emphasise my worries.

Now, I have always been a worrier, it’s been a long running family joke for as long as I can remember. I get it from my Grandma although I stand my ground on the fact that there is no- one in the world who worried more than she did! I do recognise this trait in myself and I do believe I have got better with age. However, although I have got better, I will now totally contradict myself and say in a way I have got worse because although I don’t worry about as much, the things I do worry about, I worry about BIG time. I definitely over think more and sometimes my worries are totally and utterly ridiculous and I will find myself researching how I would survive in a falling lift situation!

As we get older we become so much more susceptible and sensitive to the world around us. It astounds me when I see children running, playing, socialising fearlessly, not worrying about falling or hurting themselves, worrying whether someone is being mean or isn’t who they say they are – when does this change and why? I had the same upbringing as my brother yet he doesn’t worry to the same extent as I do – so is it a gender thing? Is it nature or nurture? I don’t know.

The worries I live with on a daily basis now are obviously different to those I had a few years back – the money worries I used to think I had were nothing compared to those I have now! But worry is all relative. My money worries are no more or less important than anyone else’s because they will be just as stressful depending on different scenarios. Those with children or new homes or a broken boiler or a flat tyre or a lost wallet – all worthy causes for worry. But referring to my earlier CBT task, the worries I found myself writing down daily didn’t seem to have any next step scenarios. They all had more long-term outcomes so seeing them written down in black and white over and over every day  oddly enough made me worry more! Oh Hannah Green! So long story short I’ve stopped writing my daily worry diary until I can ask some questions about how I can approach it differently…I don’t want to fail my targets…yes, I turned up to my last session feeling like a naughty school girl because I’d not met all my targets and honestly, at the age of 31 I felt so bad, like a detention was waiting for me! My lovely therapist laughed at me when I told her and just said that was my problem, I worry about things I shouldn’t worry about….but honestly, that’s me and I know that has to change in order for a healthier mindset.

Worry can be irrational – I mean, my biggest fear, well one of them, is bears. Not teddy bears but the kind that can run, swim, climb trees…you ain’t getting away from one of those bastads if you disturb its cubs – have you even see The Revenant?! Yet I have learnt that trying to squash someones worries isn’t helpful, you may be trying to help them, goodness knows I’m sure I’ve done it so many times but the best way to help is to just listen, offer a hug and tissues to wipe the inevitable tears and then throw in a good old quote for good measure – finishing with a laugh always helps!

Worry is something that will never be extinct in our world. New fears and worries occur every minute of every day for people and sometimes they’ll be worries they’d never dreamt of. Watching the news over the past few months and witnessing the horror of the various terror attacks across the world but mainly in London and Manchester, in places and situations so close to my heart, it’s unthinkable how many people will have been affected by the atrocities. So many of the survivors, the emergency services, news crews and witnesses will be now living with the effects for days, months and years to come. They will be experiencing worries and fears that hadn’t entered their minds before, yet for some they will now be devouring their existence. However, when I’ve read reports and watched interviews I am amazed, encouraged and proud to see how many of them approach these fears by fighting, not taking flight. Facing their fears head on and getting back to their daily lives – going to concerts, returning to Borough Market, walking over London’s bridges.

This is not how everyone will respond to fear and worry, fight and flight are both two very valid responses – I’ve done both at varying points in my life and neither were wrong choices. What I mean is, the human race is amazing. We support each other in the choices we make and help each other take steps forward to reach our end goals, worry will always be there in one form or another yet it won’t beat us. It won’t beat me.

And now comes the toughest part of this blog – what worry quote to end on, there are just too many good ones to choose from hahaha!

 

Have a fab week fellow worriers…or should that be warriors?!

#hairlesshannah

A very spoonie-fied blog

I’m sorry I’ve been absent for a while – well, almost a month now. There is no real excuse, especially when I know how writing helps me, but I just haven’t had the urge to write, I’ve had a slump and I thought that rather than force out blog posts that I didn’t really believe in, I’d stop. Pause. Take stock and tell myself it’s okay to take a break and come back as and when it felt right.

I am disappointed in myself that the month of May has been the time for this period of nothingness because it’s an important month for ME/CFS. May is ME awareness month as well as awareness for many other hidden illnesses. I’ve watched and followed eagerly how my little spoonie online community have raised awareness and done so much for the cause. Next year I will do more but for this year, all I can offer is this blog post.

I’ll start with a little fun fact; May 12th was Florence Nightingales birthday and it is suggested that she was one of the earliest sufferers of ME.  From 1857 she was often disabled by ill-health and spent much of her time bed bound; she is now considered a kind of patron saint for this under studied illness and this is why May 12th is used as a day for awareness. How about that eh?!

I then thought I would recap the main facts about ME, so I have used the main websites that I find useful and informative to provide you with the following:

The National Institute for Health and Care Excellence (NICE) provides three levels of severity for ME: mild, moderate and severe. This is how they explain them:

  • People with mild CFS/M.E. are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week.
  • People with moderate CFS/M.E. have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for one or two hours. Their sleep at night is generally poor quality and disturbed.
  • People with severe CFS/M.E. are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise.

I come under moderate. I won’t go on about my personal experience because I feel I’ve done that enough in previous blogs. However, progress has been made in that the 4-6 month wait for CBT has been destroyed and I have already had my first two sessions. Now, I know there is much debate about the usefulness and effectiveness of CBT for ME patients and I must admit, initially I was wary. But you know what? This is the only thing, the only offer of help I’ve had from the NHS so I am grasping it with both hands. I’ve gone into it with an open mind but also with open eyes. Luckily I made an immediate connection with the therapist and I trust her – both a bonus when you consider all the bad luck I’ve had over the past 20 months! We have set targets together to try to help me with my sleep – not working yet and as she predicted have made things worse before they hopefully get better. I like her because she is honest. There’s no BS, it might work for me, it might not but with everything crossed it could improve on what I live with daily and that’s enough for me thank you very much!

  • ME is a chronic illness which means it is long-lasting with no cure or guaranteed treatment.
  • ME is a physical disorder – having ME is NOT a state of mind and there is real scientific proof for this.

Life with ME has made me reevaluate everything about myself and my life, I guess a life changing illness will do that to you. It’s a terribly lonely illness. Yes I am surrounded daily by my wonderful family and I have constant contact with friends but I don’t have that connection with people anymore. I don’t have work banter, I don’t have social banter or random chats with people you may see when you’re simply out and about. I spend A LOT of time alone, sleeping, thinking…and that is lonely. It’s isolating and it makes daily life tough to face.

Raising awareness of illnesses like ME is so very important. Even doctors don’t know very much about them and patients – including me – often have to educate their GPs and specialists about possible medications, treatments and symptoms. It’s a frustrating situation that can be made easier by more people being educated and therefore having an understanding of what sufferers are living with on a daily basis.

Thank you for reading, thank you for baring with me and thank you for your continued support.

Have a lovely weekend.

#hairlesshannah