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

 

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Troubled mind…

I’ve been having trouble recently, trouble with my brain. My mind. I’ve been spending a lot of time in pain, both during the day and the night where the pain is so unbearable I can’t find comfort and so I have all this time on my hands to think and ponder. Specialists have suggested as a next step that I start seeing a psychiatrist – I know, scary word – but the explanation as to why try this is actually beginning to make sense to me.

The immunologist explained it like this. People bandy around the word stress but when stress is acute it can actually cause physical effects on the body which can linger long after the actual cause of stress has gone. For example, we think we can almost 100% say now that the stress that was the catalyst for all of this was the new job in Dubai and the lack of support I received. But that was over sixteen months ago now so when doctors kept saying stress may still be a cause, I just didn’t understand. But, stress to that level will have had a physical effect on my body i.e. the asthma attack I had and the recurrence of the glandular fever. Stress can manifest itself in so many different ways and because it alters some of us physically: our state of mind will also change along with it i.e my life has never gone back to being how it was before.

However, we/doctors don’t often see the brain as a part of our body that needs treatment. It goes unnoticed until the word mental health or depression is mentioned and then there is this huge stigma attached to it. Initially when the word psychiatry was mentioned I automatically thought they thought I was bonkers. But no, it was a medical professional acknowledging that what I am going through is having a profound effect on both my physical and mental being. That there is a chance that by treating my mind, by looking at calming me internally, targeting the potential stress triggers that may be lingering, it will potentially have an impact on my physical symptoms.

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It has taken me weeks to get my head around this and I’m still not sure I trust in it totally – I want someone to help me with my pain, with this new life – I want a cure, I don’t want to be managed! But, I guess in the meantime all I can do is trust the healthcare professionals dealing with my case. This idea has sparked something in me though because although I write this no holding back blog, I do hold back. I hold a lot back actually because I STILL continue to worry about what people may think about me, what they may say behind my back. But that isn’t healthy and I know that, and that doesn’t mean I’m going to start divulging every little thing about my life that may or may not still be clinging onto my brain awaiting exorcism so I can move forward, far from it! I just mean that I should write about things I want to write about without fear of who will read it and cast opinions – we can’t all agree on everything and I am under no disillusion that my blog is exempt.

So this is a new blog post from a somewhat pain-clouded Hannah who needed to get something off her chest that has been clinging on and has been causing stress and upset for far too long now. So here we go, attempt one at looking after my mind and being true to myself!

“You’ve got too much time on your hands” was a sentence thrown at me in the early stages of falling ill. Apparently too much time to worry and over think things and therefore be way too sensitive to suggestions made by this particular person. I’ve never openly written about the demise of this friendship because I’ve been too worried about mutual friends etc. It has been suggested recently by professionals that this may possibly cause emotional stress because I’ve held onto the hurt and pain for too long without properly getting rid of it. I know that I’m too cautious of other people’s feelings to the detriment of my own.

I’m definitely not here to rip to shreds a friendship that I cherished very dearly: I suppose that I have just had more time to think about the downfall of said friendship now that enough time has passed for me to not feel so bitter and tormented about it. As I’ve thought about it more, I’ve realised that it was this friendship that has in turn caused other insecurities to creep in more recently about the strength of other relationships I have. Isn’t it funny how we can let one person colour our views and opinions of others? How comments made by one individual can sway and impact our thoughts, feelings and outlooks? To my knowledge, only one ‘friend’ has ever questioned my illness. But that is all it took. That was the start of my self-doubt because hell, if someone who I was so close to can think that all I needed was a “kick up the backside” then surely others must feel the same too? As things have got worse over the past few months and I’ve been able to do less, as people’s lives carry on and mine doesn’t, I’ve questioned whether people think I’m just dragging out this façade and are just getting fed up with me.

As I’ve said before in my blogs, I know I am far from perfect, I know I have my faults but I do self reflect a lot and if I’m wrong or cause hurt then I am happy to hold my hands up, talk things out and move forward. But, as I have also said before, my friends, my close friends – they become my extended family because, as I have found out, when the chips are down, it’s your friends as well as your family that will literally drag you forward kicking and screaming. Sometimes I think we only see the good in people because we love them and although this particular friendship is done and dusted, this is by no means reflects on the years of happy times we had.

However, the hurt I felt when this friendship unravelled was similar to the pain I felt when I split up with my ex. After all, we had a relationship, we shared our lives – ups, downs, tears, laughter, travels, weddings, babies and everything in-between and I would of course do it all again. I have spent hours thinking about what I did wrong for this friendship to have failed so miserably but you know what, all I come back to is the fact that I got sick. She didn’t believe me, she didn’t have time to support me because of her own life and in the end she tried to turn it back onto me because she didn’t have the guts to see that she was in the wrong. Now, I get that people have busy lives, ALL of my friends have jobs, most are married and some have children yet ALL of them have managed to text, ring, send post and come visit me, we have maintained our friendships as two ways streets. They made and continue to make time because a) they want to, b) they know I’d do the same for them and c) we make time for those we care about whether they are blood related or not, whether we have 23 hours of our days for the next 6 months planned out already – we simply make the time. End of. No excuses.

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I may feel like I am at my weakest at the moment, I’m currently writing some of this at 1.37am whilst in excruciating pain, but it’s these times that give me strength. Strength to know that I did nothing wrong in this specific situation, I can finally see that now and I need to get it out there in order to let it go.

But because I’ve had time to think and look back over the last sixteen months I can quite clearly see that only one person is no longer in my life and everyone else has mysteriously stuck around. So that tells me something: my friends do believe me, do trust me, do love and support me and do want to help me gain strength within this new life I find myself living. I’ve had time to read countless blogs about people living with chronic illnesses who have lost friends via similar circumstances. Why is that? Why in the time we need these friends most do they desert us? I really can’t come up with an answer and that is the bit that still hurts because I will never know. It just appears that because we suffer with a hidden illness, some people think that tough love, harsh comments and causing tears will snap us out of this situation we’ve ‘landed ourselves in.’ And you know what – shockingly, that doesn’t work because we are actually are ill. We can’t be magically cured, we need to be trusted, loved, supported and above anything else believed. Because if you think we are vying for attention believe me, there are soooo many other ways of doing it without making ourselves broke, medicated up to the eyeballs, missing out on life in general and getting depressed.

Make it your task this weekend to tell the people you love how much you cherish them, make them feel loved and make time to send a text to a friend you may not have spoken to in a while. Those little things are so much more meaningful sometimes than the bigger gestures.

Have lovely weekends.

#hairlesshannah

Unwanted visitors

So many people I know have had some, metaphorically speaking, unwanted visitors knock on their doors lately that you can’t turn away or shout at or send an e-mail to because they are part of you. Illnesses, diseases, things that you can’t slam the door on.

I am obviously purely speaking about my situation and therefore my experiences, feelings and emotions so they may not correlate with anyone else so don’t get cross if you don’t agree!

My illness is hidden so I find myself in a situation where I have days when I look better than others which seems to indicate to people that I’m getting better. I’m not. That is why it is called a hidden/invisible illness and that is why it is so frustrating. I think I become even more prone to this kind of comment because I don’t show my true feelings and emotions so therefore it is even easier for people to assume I am getting better and feeling great. I’m not.

Because my ‘complex’ case is STILL under review by many doctors and specialists, it seems like I am forever waiting for answers, fighting tirelessly to get people to fight for me! I’m 16 months into this now which I know is a long time. So much can happen in 16 months and has done to most of the people in my life – good, great, bad and bloody awful. But it also means that due to no fault of anyone, and I mean that wholeheartedly, life goes on. My life is stuck but other people’s aren’t. So therefore I have become lonelier, felt more isolated and even more desperate for healthcare professionals to take me and my life seriously and help me.

But it seems that healthcare professionals, even those at supposedly the best hospitals in the country, don’t feel or see the urgency in my eyes. I am acutely aware that what I have is not life threatening and don’t ever want to compare it to those who are living with those illnesses or are no longer with us because of them, but what I am living with is totally life changing for me. Last week I met with the first doctor in months that actually listened, took time and an interest in me and gave me hope. Only for that to be totally shattered when he phoned me Friday to tell me most of what he’d said was incorrect. The referral will take months and even then may not be accepted as it has to go through funding applications and that the help he’d promised in the interim was for those who live in Southwark only – when did I ever tell him I lived there?! So here I sit once again, being totally let down by the only people who have the power to help me.

I don’t recognise my life anymore. I described it this week by saying I feel like I have an existence, not a life. Most of the doctors and specialists fail to see me as a human. As a 30-year-old woman who has so many hopes, dreams and aspirations,  who’s existence is mainly lived out within the four walls of her bedroom. The pain I have is constant and worsening, I’m experiencing pain insomnia on levels I never knew existed. It takes an age to get up and get ready and in all honesty it’s taking all I have at the moment to even do this because really, bed is the place that comforts me most regardless of the pain.

In bed, I only have to move to change position and shift the pain locality. In bed it’s quiet, the curtains are shut and it’s dark. I can drift in and out of consciousness, cry or just contemplate and dream. If I’m up, I feel like I have to put a face on things, I manage to hide the pain because that’s easier than revealing the truth. If I’m up I can’t manage to do much which frustrates me. My hands are becoming even more painful so even typing for long periods hurts. All I really have is my blog to make me feel purposeful but creating the content for it often causes more pain than I feel the blog is worth. But then through the blog comes the communities I’ve become part of – the spoonie and chronic illness heroes and heroines that give me hope and strength are incredible.

The doctors don’t see the life that I seem to have left behind. I can’t drive, I can’t socialise, I can’t stay up late, I can’t shop or treat myself, I can’t save for holidays or beautiful bags and shoes, I can’t treat my friends and family, I can’t blare my music out and dance around my bedroom whilst getting ready for a girls night out. I can’t even drink a cider because of the tablet concoctions I take daily – it comes to something when a practically teetotaler is craving a cider! Lately, I’ve even come to wish I hadn’t experienced the life I had in Dubai because life was so good. Even though work is more than likely the trigger for this situation, socially life was amazing and the opportunities that fell into my path enriched me more as a person than I ever dreamed of, I had plans that were unfinished and unaccomplished which means I know what I’m missing and then I start to resent that.

I know there is no easy fix to this. I know there is a long road ahead and so much more uncertainty but all I can tell you is that I wish this bloody unwanted visitor would f**k off out of my circle as quickly as it arrived.

I read a quote another spoonie posted the other day and I loved it – it’s not me that’s unreliable, it’s my health.

Rant over! Be nice to people today and remember, they may be going through something that you just might not be able to see. So be kind.

Happy Saturday.

#hairlesshannah