There’s nothing I love more than a new word to introduce into my daily vocabulary, especially when that word sums up exactly how I’m feeling. I first heard the word ‘ennui’ during a conversation with a dear friend, who announced on our day out to New Brighton that the grey and boring environs were the perfect conditions to elicit this lesser-known emotional state. I suddenly realised that ennui not only applied to being in New Brighton, but also to my life.
The UK borrowed the term ennui from France during the height of 18th century European Romanticism and I’m so glad we never returned it. It was used to describe a rather fashionable kind of weariness, boredom and dissatisfaction with the world and a preoccupation with the emptiness of existence. Back in the day, artists and poets suffered from it and those with ennui were seen to have spiritual depth and sensitivity.
As someone who has suffered all manner of mental maladies towards the darker ends of the mood spectrum, I’m always monitoring myself for any signs of relapse. I had been feeling low, unmotivated and bored for a while, hence the lack of blog posts and over-reliance on Primark benders and eating. I couldn’t decide whether I had depression, the winter blues, Seasonal Affective Disorder or just needed a kick up the backside. After many careful assessments of myself along with the day out to New Brighton, I deduced that my mind was in fact, a quagmire of ennui. I possibly needed a kick up the backside too, but in a counter-intuitive move, I decided to embrace the ennui for a while and see what happened.
I’ve always been the type of person to try and force myself through any periods of depression or so-called ‘negative’ feelings and just power through no matter what. I’ve always found it particularly difficult to give myself a break and as soon as I realised I had ennui, I felt guilty and tried to push myself once more into being a useful unit of production. This only enhanced the ennui however and eventually I was forced to ask myself, ‘why am I trying to fight it’?
I knew it probably wouldn’t last forever, plus there were stresses and strains going on around me which were giving the ennui big beefy muscles, so I made the executive decision to be at one with my ennui and invite it home for tea. If it was good enough for artists and poets, it was good enough for me.
Accepting it has been rather wonderful. I managed to keep the fabric of my life together but stopped pretending I was OK whilst doing it. It was interesting that when I spoke of my ennui, lots of other people were intrigued and said they didn’t realise there was a word for this feeling. The highlight of having ennui was that I just didn’t care about not caring about things. The pressure of ‘should’ disappeared and I felt a lot more relaxed than I had done in ages.
Nearly two months later, I can feel that the ennui is starting to lift. By letting it run it’s course, it has burnt itself out and some different emotions have come along instead. I may never find out the reasons why ennui descended, but not judging it seems to have worked.
The worst that happened during the ennui, was that nothing really bad happened. Everything is still exactly as I left it and I am now able to return to my writing and my life afresh and with a new word at my disposal. We can often feel under so much pressure to be super-achievers and never admit to floundering, but I’ve discovered it’s fine to grind to a halt in ennui laden traffic once in a while and peer at the world through brown tinted spectacles.
People say that moods and feelings are like the weather and I think that’s true. My dalliance with ennui was a simple rain shower compared to the severe depression I’ve suffered in the past. But I think giving it the correct label and approaching it with acceptance and patience stopped it turning into anything more nasty and it’s a lesson I will be applying to any more new and unusual mood states that I discover.
*This post was also kindly published by the Huffington Post UK on their Lifestyle webpage and is also featured on my website lauraroche.co.uk
Hello and welcome back to my blog! I wanted to update you on my absence from WordPress and explain a little bit about what the hell I’ve been up to. It’s all good folks, very good and I have some exciting developments to share with you!
The main thing I’ve been working on is my website, which I have pretty much ‘moved house’ into. From now on I will be doing all my blogs and other writing from there and I would love if it you would take a peek and consider following me over. I’m at www.lauraroche.co.uk and if you want to keep track of all my writing shenanigans, there is a box which will pop up inviting you to subscribe to my newsletter. It would mean the world to me if you subscribed and then you will be notified via email every time there’s a new blog post, article or exciting snippet of writing news. I’m still going to be writing about mental health, but am also venturing into other areas such as lifestyle, personal development and self-esteem.
I’ve also been a regular contributor to the website mental-health-matters.com and have written a ton of articles on topics such as Generalised Anxiety Disorder, Postnatal Depression and Bipolar Disorder. The website has loads of different resources and articles on all kinds of different mental health conditions and I’ve included samples of some of my work on my website if you would like to take a look.
Besides this, I also managed to score a gig as a blogger at the Huffington Post UK! Again, I’ve included links to my articles on my website and it’s been a fun and interesting experience putting myself out there into the wider writing world. I even got trolled in the comments of one piece I had published, so I really feel I am truly on my way to becoming a proper writer!
I’ll still be keeping this blog active as I’d like you all to be able to access the stuff I’ve done so far and I’ll pop back from time to time to check comments etc. Of course I’ll still be maintaining my subscriptions to everyone I follow on here, as I love to read your blogs and want to keep track of what you’re all up to!
So I’ll sign off for now and hope to see you soon over on www.lauraroche.co.uk. Thank you so much for all the support you have shown me here over the years and remember, this isn’t the end – it’s the beginning!
The ‘Time to Change’ campaign has been instrumental in tackling stigma around mental health and on 4 February, their ‘Time to Talk’ day encourages people to talk openly about mental illness.
I’ve suffered with depression and anxiety for most of my life and I can vouch for the fact that talking about it has helped and probably saved my life.
However, I feel I must issue a warning to people who may be thinking of taking the plunge and doing some talking. You may talk to lots of people before you find anyone that wants to understand. You may talk to people and get a bad reaction, or no reaction at all. You might be starting therapy and you could well get someone great to talk to. Or your therapist may respond with crass, shocking or downright stupid comments.
When you have mental health issues, you already feel low, useless and unworthy so if you talk about your illness and get an unfavourable response, it can make you feel a whole lot worse.
Having said that, you will also find that there are a ton of amazing people out there who do want to understand and try their very best to help. It might take a while and you will have to test the water with friends, family and sources of professional help to weed out the good, bad and useless.
I’m used to discussing mental health now, but it has been a long process of trial and error and a steep learning curve. To anyone thinking of opening up, I have a few tips on what to realistically expect:
1) Stigma around mental health is usually borne out of fear, ignorance and denial. It is everywhere. You could find a complete stranger at the bus stop chatting to you about ‘dangerous schizophrenics’ and also hear a comment like ‘what have you got to be depressed about?’ from your partner. Prepare to be surprised, but don’t let it stop you talking or challenging any negativity which comes along.
2) Lots of people don’t really know what to say when you open up and that’s to be expected as the norm. Be patient, ask if they have any questions or worries. When talking about mental illness let people know why you are telling them. Mention that you do not need advice, suggestions or ‘fixing’, you are just being honest and trying to raise awareness. Ask for specific help if you need it. Sometimes people will want to support you but don’t know how. This could be things like doing shopping, cooking or cleaning if you are struggling or phoning more regularly.
3) Stigma comes in all kinds of interesting packages from unexpected sources. Along with misconceptions and judgements about mental illness you could find yourself ignored, ridiculed and disbelieved by people who are meant to be helping you. For years I was told by doctors and therapists that I wasn’t depressed or anxious. One GP remarked that I was ‘too pretty’ to be depressed. My first CBT appointment was spent desperately trying to convince the therapist of my feelings. He remarked that he had ‘worked with people in hospitals who were too depressed to wipe their own arses’ and as I could wipe my own arse, I was apparently fine. A psychiatrist also told me I would be ‘fine’ because I could articulate my problems very well. I’m not suggesting you become a gibbering unwashed wreck, but watch out for being judged for your presentation and be prepared to challenge it.
4) Some people will really struggle with you opening up, like family, friends and anyone close to you. It may come as a shock that you have disclosed or discussed a mental health issue and they might react badly. Don’t let this make you feel worse. Don’t apologise for how you are but also don’t expect people to understand straight away. Changing attitudes and removing barriers to discussion takes time and effort and not just from you. I think it’s worth pointing out that some people may never understand or be open to trying no matter how much information or time you give them. I think it’s best to just accept this and move on without letting it crush your confidence. For everyone who struggles or reacts badly there will be just as many positive or neutral reactions that you can work with.
5) Timing is everything. A campaign like Time to Talk is a great opportunity to take a leap of faith, as you can use it to bolster your confidence and know that thousands of other people are talking too. They also have a range of information you can give people if the act of physically talking is difficult. But if it’s not your time to talk yet, that’s OK. You have to be ready and if you never want to talk, that is absolutely fine.
Despite the negative pitfalls I’ve mentioned, I feel that talking about mental health is not only worth it, but hugely necessary. Through persevering with opening up, I’ve found the confidence to deal with and challenge any shocking, surprising or negative reactions which may come along. Be prepared, but don’t let it stop you if it’s something you’ve been thinking about doing.
For information, support and resources about the Time to Talk campaign you can visit http://www.time-to-change.org.uk/
This article has also been published in The Huffington Post UK –
- When your partner arrives home from A+E with two broken arms you will experience many different emotions such as shock, horror, fear, sadness and a cold sinking sensation as the words ‘toilet’ ‘wipe’ and ‘arse’ come into your head.
- The first question other people will ask is, ‘how did he do it?’ and the second is, ‘how will he go to the toilet and wipe his arse?’
- A children’s extending plastic toy hand with moveable fingers can help when you are the one who has to solve the problem of how he will go to the toilet and wipe his arse.
- The stronger the painkillers, the more unpredictable the effects will be. Suddenly, Bargain Hunt will become hilariously funny. Sometimes nothing will become hilariously funny. Don’t be selfish with the tablets however, it’s your partner that’s in agonising pain after all. If you’re very lucky, they will bung things up nicely for them and you won’t need the toy hand.
- If you accompany your partner to any hospital visits, be sure to knock on ward toilet doors before you try the handle. You could find yourself face to face with other people’s bowel dilemmas, although it is refreshing to learn that in an emergency you can poo standing up.
- If you don’t have a speaker phone facility, you can avoid arm fatigue from holding the phone to your partner’s ear by wedging it into a strategically positioned headband.
- Brushing someone else’s teeth is both surprisingly difficult yet strangely satisfying. It can also foster a new level of intimacy as you discover more fillings than you’d seen whilst snogging and find out they don’t usually do behind their own front gnashers.
- Your strengths and weaknesses will emerge in one fell swoop. I discovered I’m good at high level creative thinking, multi-tasking and presenting a stoic consistent level of care without moaning. On the down side, I’m inexplicably shit at putting the bins out. Every time I did it, calamities occurred including not being able to unlock the alley, cutting my thumb, and getting trapped in said alley.
- Don’t go on a brave massive shopping trip alone and then believe the taxi company when they say the cab will be at Tesco car park in ten minutes. Despite several more furious and desperate phone calls you could still be there one and a half hours later while your incapacitated partner is starving at home. Don’t then assume the best plan is to wheel the trolley to the road to get a black cab. No matter what the Tesco assistant says, you cannot get the trolley up the corrugated ramp and you will invariably get stuck. Make sure a neighbour is available for immediate rescue purposes. You should then start shopping on-line because a few bruised bananas, stingy sell-by dates and substitutions are well worth it to avoid this perilous debacle until your partner can drive again.
- When taxis do arrive in a timely fashion, you may be surprised to learn that 90% of drivers make very good crisis counsellors. They will display excellent empathy, although it may be delivered with swearing. The other 10% don’t talk at all which can be just as good sometimes.
- The day your partner can go to the toilet alone and wipe their own arse is cause for jubilant phone calls to friends and family, delighted Facebook status updates and general unbridled celebration in the street. By now you will be amazed at how normal it is to discuss these matters in public.
- Life and the human body are fragile but also amazing. You can break both of your arms, be rescued by ambulance, have your arms reconstructed with metal bits and in a few months, they will work again!
Let’s be honest, it wasn’t ideal having mental health issues under the previous government, but now the Tories are in power, their proposed austerity cuts to services and benefits have understandably caused shock-waves and concern for sufferers.
The problem is, having a mental illness means you already feel vulnerable and dis-empowered. To know that the struggles you already face are only going to get more difficult is a slap in the face from the Conservatives.
I’ve needed more than my fair share of interventions and benefits over the years and my mental health CV boasts an impressive selection of services used.
All of this has had a huge positive impact. The help I’ve received has not only kept me alive but in the case of some therapies, changed my life. I’d even go as far as saying my mind is in good order now. But what if I need help in the future? What about the other one in four people that are still affected by mental health issues, or who are only just seeking help for the first time?
It’s ironic that these cuts to services coincide with a rise in mental health awareness campaigns such as Rethink’s ‘Time To Change’ and a growing number of celebrities coming forward to urge us that being open about mental illness is a positive thing.
Will it do any good to speak up about mental health if the Tories have taken their financial cleaver and butchered support services and benefits?
I think it will and it’s important to remember there’s still much that you can do to take back power and feel you have some control over the situation. It’s time to stop circulating that photo of David Cameron wearing a Thatcher wig on Facebook and think about what we can actually do to create change.
The first thing to bear in mind is that you always have a voice and it is your most powerful weapon, no matter how much it may feel as though your needs have been silenced. It is so important to speak up and talk about mental health and the struggles you face, not least to fight the stigma which surrounds the subject. Secondly, you always have the choice to fight back against any decisions or actions taken against you.
It can be difficult to fight from a position of illness and disability but as a group collective voice, more can be achieved than going it alone. Plus, it’s easier. That doesn’t mean to say you shouldn’t write to your M.P, sign petitions and campaign individually if you are able to, but getting your opinions heard on a grand scale involves aligning yourself with as many powerful organisations, groups and people as possible and letting them do the talking with you and for you.
Being aware of and getting involved in the work of the leading mental health organisations and charities is crucial. I’m closely following MIND, SANE and Rethink, all of whom provide advice, information and support on all aspects of mental health as well as helping you to feel you’re not alone. Although they shouldn’t become a substitute for individual specialised help, they are somewhere to turn in the meantime.
Noticing which key public figures and celebrities are supporting mental health causes is also a great way to ‘piggy back’ your voice into a wider arena; let them know via Twitter, Facebook page or even old-fashioned email or letter that you support the work they are doing.
Or you could always go straight to the top and tweet David Cameron some suggestions for change. Without getting too troll-y, it might give him something to read over his morning coffee, although I’m guessing he will be too busy decimating the NHS to reply.
Find other people who are in the same position as you, through community or online forums and support groups. Information and knowledge shared is power. There are some excellent Facebook groups such as Disabled People Against Cuts (DPAC) which offer advice and support to anyone affected by austerity cuts, also the non-profit group Fightback4Justice.co.uk offers advice on benefits and will help you to fill in those designed-to-catch-you-out forms. Don’t forget, there are also national organisations such as Disability Rights UK and the Citizen’s Advice Bureau, both of which offer free advice and support.
You could also start your own petition, write a blog or create a group to keep abreast of Tory developments and discuss ideas with a community of like-minded people. There are lots of anti-austerity protests happening around the country too, if you are well enough to turn up and wave a placard.
The one thing you shouldn’t do is keep quiet or accept decisions made against you at face value.
Because that’s what the Tories want.
P.S I tweeted David Cameron but he hasn’t replied.
@David_Cameron Please could you stop making cuts to mental health services and benefits? Thanks!
*This piece has also been published in the Huffington Post UK and as soon as I work out how to do hyperlinks, I will be sure to hyperlink it. In the meantime, here is a regular style link –
The visit of the Three Queens to Liverpool recently to celebrate the 175th anniversary of Cunard was a magnificent and spectacular event. I very much enjoyed the pomp, circumstance and sense of occasion this unique piece of maritime history created and I loved watching the spectacle of the ships on the River Mersey.
I was impressed to the very core at the size and splendour of the ships and marvelled at the feat of engineering involved in their construction. It’s amazing that man has created such a remarkable contraption that despite its enormity, can do a 360 degree turn in the middle of the river like it’s no bother at all.
There was lots of murmuring in the crowd about how lovely it would be to take a cruise on one of these beauties. As for me, I wouldn’t travel on one even if you paid me!
Let me explain. I suffer with Generalised Anxiety Disorder which can be summed up by saying you are scared of everything. It doesn’t matter how big or small something is, whether it is seen as exciting by everyone else or even whether it is likely to happen. Coupled with an over-active imagination, I can conjure up doom-laden scenarios at a moment’s notice.
The thought of cruises and subsequent disasters has bothered me ever since I watched the TV film The Poseidon Adventure as a child. The main areas of concern are the fact that the ship is out in the ocean for a long time which increases any risk factors, plus these boats are generally very large beasts and so what happens if you are stuck in the middle of one when it starts to sink?
In my generally anxious, over-actively imaginative brain, I can’t help but conjure up what might happen if I was asleep in a cabin far away from life boats. What if the warning signals weren’t issued in time and I woke to find my bed was floating sideways and there was a shark in the bath? How would I contain my panic in order to navigate my way through the many corridors along with thousands of other scared passengers to the exits? No amount of floor plans and brightly lit signs are going to help in this instance.
Plus, no matter how much you want to tell me otherwise, I don’t believe there are ever enough life boats. Even in the case of the Costa Concordia, the amount of life boats didn’t matter, as they had been fixed on in a stupid way which meant that they wouldn’t lower properly because the ship went down at an angle.
The thought of the ship sinking isn’t even my worst fear.
What if I did manage to jump off the ship but couldn’t stay afloat? My swimming is rubbish, I can only do about two lengths.
What if I did get a spot in a life boat but the rescue planes couldn’t find us?
What if I got third degree burns from being unable to shelter from the sun in the lifeboat?
What if various sea-bound mammals took a shine to us in our flimsy escape vessel which has inflatable sides just perfect for sharp teeth to ravage?
Those are my very worst cruise ship fears but I also have other issues which freak me the hell out just thinking about them. One of the most mind-boggling concepts for me is the idea of a swimming pool on board a ship which is on the sea. My brain cannot understand how you would process the swaying. How would you know whether it was the pool water, the ship or the ocean making you sway? Plus if you look at the sea while you are in the pool, isn’t that very confusing?
I can only hope that everyone on board the Three Queens right now has a copy of the SAS Survival Handbook, which has an excellent section on survival at sea (for shark attack – punch it between the eyes) As an added measure, I’d advise them to strap all their important possessions like passports and make-up to their bodies in waterproof bags.
I’m not saying everyone who suffers from Generalised Anxiety Disorder thinks like this, I’m sure there are many GAD folk who would love a luxury cruise. This is just the way my irrepressible, inscrutable, outrageous head operates.
I’ve had a year of Cognitive Behavioural Therapy, which is the treatment du jour for this condition and while it has been extremely effective in changing my belief that everyone I know is going to die soon, the cruise ship fear persists. I’ve accepted it as part of my personality and hope to meet other anti-cruise ship fanatics for company one day.
So while I will effusively greet Queen Mary 2 when she returns in July, I will be keeping a safe distance and practising my CBT techniques while I’m stood at the waterfront.
* This piece has also been published in the Huffington Post UK’s Lifestyle Blog section if you would like to view it there –
For M.E Awareness Week 2015 I thought I’d give you a little glimpse into the world of M.E…
- I’ve been living my life with M.E for company since August 2011. It appeared after a bout of swine flu and settled itself at a mild to moderate level quickly afterwards. It’s also known as Chronic Fatigue Syndrome which I much prefer as a label, not least because it’s easier for people to understand.
- Although chronic fatigue is the headline act, M.E features a whole host of supporting characters such as pain in the muscles and joints, a random inability to control your own temperature and brain fog (technical term for your mind failing to work according to the instructions)
- 25% of people with M.E are so severely affected that they are housebound, wheelchair bound or bedbound. I’m lucky enough to be able to goad my body into functioning semi-normally, although it is often feels like I’m carrying a five pound sack of spuds on each shoulder whilst a mouse nibbles on sections of my brain.
- Despite Denise Robertson claiming on ITV’s ‘This Morning’ that “M.E doesn’t last forever”, it can and often does. Only a small percentage of people manage to regain their former level of functioning. I like to think I might be one of the small percentage. As Henry Ford said, “If you think you can do a thing, or you can’t do a thing, you’re right”
- Living with M.E is like trying to use a mobile phone with a faulty charger. My body battery is never more than 50% charged and if I fling myself around doing too much, my power dies and I’m unable to function. Managing and conserving low energy levels are the key to coping with this condition.
- The hardest part of having M.E at my level is that you feel dreadful but look fine. Unless you become a chronic illness bore and constantly regale people with tales of bodily woes, it’s difficult to explain to people why you can’t do everything you want and need to do. It’s even more difficult to explain why you can’t do everything THEY want and need you to do.
- M.E has taught me to prioritise and organise to within an inch of my life, otherwise important jobs would never get done. I was rubbish at this before.
- It’s also taught me to say goodbye to the futile practices of perfectionism and being competitive. I was never ‘good enough’ before I got M.E, but now I’m happy with the simple things such as holding down my job and managing to put a few decent outfits together while I’m at it.
- Having M.E has also helped to separate the wheat from the chaff where friends are concerned. Not everyone can cope with a friend who is brilliant at emails but who doesn’t have the energy to materialise in person very often. Luckily, I’ve now got a fab core group of friends who don’t judge me for my methods of keeping contact.
- You can still have fun with M.E. It’s not as easy and you might have to redefine what fun means, but fun is out there if you look for it. My pre-M.E methods of fun included dance, long walks and endless socialising. Now I enjoy watching dance clips on YouTube and chat with friends online or through emails. I might not be able to walk in the park and look at nature every day, but I can grow plants and look at those instead. I’m currently having a lot of fun trying to get my new Amaryllis plant to grow in a perfectly straight vertical line. M.E might consume my body, but it doesn’t consume my mind or my life!
*This post has also been published on Huffington Post UK’s blog section – you can read it here:-
Living with chronic health problems and long-term illness can push you to your limits physically, which in turn, can send you over the edge mentally. Having lived with Neutropenia and M.E (Chronic Fatigue Syndrome) for many years now, I can verify that these illnesses have threatened to crack my sanity and spirit like a boiled egg shell hit repeatedly with a spoon.
In order to get through the rest of my life with some semblance of my mental health intact, I’ve developed several ways of coping and getting by that I’d like to share with you today.
1) There’s a lot of advice floating around about ‘accepting’ your situation and coming to terms with it and that’s all very well and good if you can do it. After 17 years of illness however, I am no closer to accepting it than I was at the beginning. I’ve now decided to accept that I can’t accept it and deal with that instead. I believe it’s healthier to feel all your feelings, even if the so-called negative ones such as anger, frustration, bitterness, envy, loss or regret. What I’ve discovered is that these feelings are fluid anyway and it’s impossible to stay feeling any one thing forever. If I allow the feelings to come without saying ‘I should have accepted this by now!’ they usually pass of their own accord and then I can get on with making the best of things.
2) Work out what your physical and mental limits in life are and stick to them. This is a lot more difficult than it sounds, but I’ve learned the hard way that ‘pushing myself’ is no longer an option. I’m done with payback and exhaustion from not listening to my mind and body.
3) In order to achieve 2) do not listen or pay attention to anyone who thinks you should be doing more. This is also a lot more difficult than it sounds but unless someone has the exact same conditions as you which affect them in the exact same ways, they have no place advising you on anything.
3) Forget about rigid time-management and organising your life. I tried this for years after I first got sick thinking it would help me maximise the time when I was well. What happened was that I had to change my plans and alter deadlines so much due to the unpredictable nature of my illness that I ended up feeling like a failure who couldn’t get things done. As difficult as it sounds, ‘going with the flow’ is a better mental approach for me than putting expectations on myself that I can’t live up to.
4) Prioritise instead and then you will be able to live with the lack of order in your life. My priorities are my health/self-care, work, partner, friends and family ( all at the top together ) Sadly, my goals and ambitions have to be lower priority because it’s just common sense that I can’t do everything at the pace I want to. Hence the sporadic blog posts, the years it took me to start getting my writing published and the YouTube channel that I’m desperate to develop, but which is moving along at a snail’s pace. Everything else like housework, decorating, crafts, reading etc is lumped together at the bottom of my priorities because if I kept up with them at the level I would like, the top priorities would suffer. Travel is nowhere on my list of priorities, even though if I was well I’d love to travel more. It takes so much energy that it is permanently on a back burner. Even going away for a few days results in payback and massive exhaustion. Trying to do everything will definitely send you insane.
5) If anyone has the audacity to say to your face they don’t believe your illness exists or that you aren’t really that sick, there are two simple steps you can follow. One is to talk to them and try to educate them about your illness and if this doesn’t work, you can go straight to step two which is to remove them from your life via the nearest available exit. If that’s too brutal for you, try a gradual ‘phasing out’ so that you see and talk to them a lot less. These people are called ‘naysayers’ and they are one of the biggest threats to your sanity
6) Indulge yourself often. Living with health problems is 20 times more difficult than living a normal life, so regular treats are essential to stop insanity showing up on your radar. For me it’s clothes and I don’t care if I have too many or don’t need any more. I work very hard to keep my job whilst feeling awful and so if I spot a new leopard print item, I’m having it.
7) NEVER compare yourself to anyone else who is well. Comparing yourself to someone who is well is futile and also a bit silly. You might as well open the door to insanity and offer it a cup of tea.
8) Don’t feel you have to put on a brave face worse still, be ‘inspirational’. All of this can take energy and make you more ill from the effort.
9) But don’t moan a lot either, because this can also be very draining, for you and everyone else.
10) ‘Big up’ yourself and remember to congratulate yourself regularly on the achievement of surviving health issues. Not going insane takes considerable effort which can’t be underestimated. I said ‘well done’ to myself nine times yesterday!
1) For Rare Disease Day 2015 I wanted to tell you about my rare disease which is called Cyclical Neutropenia. This is a disorder of the immune system which affects the white blood cells (neutrophils) and I’ve had it for 17 years, since the age of 26. I don’t make enough neutrophils to fight bacterial infections and without treatment, a relatively minor infection such as a sore throat could become fatal within 48 hours. Doctors have not been able to explain why I got it. I will have to live with the condition for the rest of my life.
2) The condition affects one in a million people worldwide.
3) I have to take an injection called GCSF every week which boosts my neutrophil count but causes unbearable side effects. Ironically, I find the treatment and the discipline of having to take it to be the worst part of the illness. Once I’ve injected, I’m very ill for two days so I can only have it at the weekends otherwise it would interfere with work. However, the consequences of not taking it are unthinkable. Before GCSF, people with Neutropenia had very little quality of life, were frequently hospitalised with major infections and often died.
4) The fact that this illness is invisible as well as rare is also very difficult to cope with. No-one has ever heard of it and that includes doctors. Nobody knows how to help me and that includes doctors. All the developments in managing my illness have been on the back of my own research and efforts. It might surprise you to know that I would gladly swap it for a worse, more high profile illness to get better support, treatment, awareness and understanding. I would also prefer to look more sick than I do and for the illness to manifest itself in some sort of obvious physical disability. Neutropenia has wrecked devastation on my life, but all I hear is that I’m ‘looking well’.
5) My life is a strange and inconsistent mix of living and being sick. I’m not completely in control of when I can work, see friends and family, clean my house and chip away at my writing goals. I’ve had to accept reducing my hours at work, earning less money, never having the house the way I want it and hoping people won’t mind if I cancel meeting them or cancel attending an important event yet again. Having said that, the times when I feel well are lived to the full. I love and appreciate every single little thing I’m able to do because tomorrow I might be sick or have to take GCSF.
6) I’m eternally grateful for internet support groups, particularly the UK Neutropenia Facebook group. I did the first few years of my illness without any groups like this and it was hard going. Neutropenia is a lonely illness. It’s amazing that now I can just go online and chat with people about what I’m going through. I’m also thankful to the group’s founders for their tireless efforts to raise awareness of the condition.
7) One thing I definitely didn’t realise when I first got diagnosed is that I’d still have to deal with all the other difficulties of life as well as Neutropenia. There are no concessions when it comes to break-ups, bills, work stress or death. You still have to deal with them even if you’re sick. I’ve learned now that if something major is happening then everything else has to take a back seat. I get through most things with a mix of painkillers, caffeine, adrenaline and willpower. I also pray every night that life won’t throw any new negative life events at me and ask that if it does, I will find the resources to get through it.
8) Having Neutropenia has sent me to the edge of despair but it has also taught me patience, determination and tenacity. Despite the overwhelmingly negative influence it has on my life, it hasn’t stopped me doing what I want. I’ve had to adjust my expectations of how and when I can do things but as long as I don’t set goals that are too unrealistic, I can make progress.
9) Having Neutropenia has also taught me to look after myself emotionally, mentally and physically. I wasn’t very good at this before. It’s taught me to take responsibility for my diet, lifestyle and wellbeing because the consequences of not doing so can make my illness a lot worse. I’ve realised I can’t be everything to everyone anymore. Anyone who brings negativity into my life can now see themselves out via the back door. Now my life is full of good food, lots of rest and people I love to spend time with when my health allows.
10) There is a 50% chance that if I had children they would have Cyclial Neutropenia. There are many reasons why I’ve chosen not to have kids and this is high up among the reasons. I’ve struggled so much with this illness that I couldn’t inflict it on a child. Even if they were healthy, I don’t want to be a sick Mum. I could only entertain the idea of being a parent if I was able to do it to the best of my ability. I know other people with Neutropenia who have kids but it’s not the right thing for me. I’m happy with my decision but if I didn’t have this illness, there is a good chance that things could have been different.
To find out more about Rare Disease Day 2015 and hear other people’s stories of living with rare illness, head over to http://www.rarediseaseday.org