Dear Ms. O’Hanlon

There must be something strange in the water coolers within newspaper offices in February each year. This time last year we were treated to Rod Liddle’s terrible views on hidden illnesses such as fibromyalgia. I wrote a strongly worded reply to that article but as it was an English published newspaper it appeared in I didn’t forward my response to the editor. Eilis O’Hanlon is not going to be so lucky this year.

I have attached a link to her piece, titled ‘It’s too mental right now’, below. I definitely don’t want to redistribute her views but I wanted everyone to know that the quotes I pick out to take apart are in fact real. I read with incredulity yesterday and waited and waited for either the punch line or for her to dismiss her views as a piece of ill-advised sarcasm.

As I say I wrote the letter to Rod Liddle in Dear Mr. Liddle but didn’t send it. I obviously should have, as I had the support of plenty of people and it continues to be the most viewed post I’ve written. So its time to get writing again, I only posted the other day and my fibro has me a bit tired today but this can’t wait as I’m so upset and I always feel better striking while the iron is hot.

Dear Ms. O’Hanlon,

It was with great disappointment I read your piece (attached below), published on Sunday February 17th. I read the Sunday Independent every week and I always begin by re-editing the paper for myself. The main section and sports section will be read so I leave them aside. Beginning with the brochure  of  a retailers weekly offers and moving through the business section, the living section and the magazine. This usually only takes a couple of minutes as I mark any articles I’ll come back to having read the main and sports sections.

This did not happen yesterday.

The headline and by-line piqued my interest and with that I found myself reading your article immediately without leaving it for later. I’m struggling a lot with depression and anxiety at the moment and many of the symptoms I’m experiencing would come under the broad tag of mental health. Personally to be in such a dark place, consumed with fear both of the future and what I may do at my lowest ebb, and read that when you contemplate your retirement you can only say; “I just want to have a nervous breakdown”, leaves me feeling your comments are facetious at best or just downright insulting and inappropriate.

Maybe you feel that in provoking a response from me and others that your article is a success, if you do then enjoy your moment in the sun. I meanwhile have spent nearly two years off work dealing with fibromyalgia, numerous other conditions and quite severe depression. You see I wasn’t lucky enough for it to last only 6 months, I will most likely be dealing with these issues all my life but apparently the only way my recovery can be viewed as successful is when I “dip a toe back into the land of adult responsibility”. Adult responsibility obviously doesn’t include facing up to a mental health issue, asking for the help needed and finding some relief from mental torture while also maintaining a home, paying bills and getting up every morning despite the fact there are days when I would gladly let my depression win.

Just to clear some other things up; I don’t enjoy “plenty of long lie-ins” as my sleep apnoea means I struggle to sleep more than a couple of hours each night. I don’t enjoy “sitting on the couch for hours at a time” as doing anything repetitive like that is off-limits as if I sit/lie down too much I get stiff and if I walk too much I get fatigued. In fact I can’t remember the last time I had no pain and that can be mental as well as physical. Oh and while we’re on it, I don’t eat chocolate cake for two reasons. Firstly, my Irritable Bowel Disease doesn’t like processed food and secondly, when I really lack confidence and am suffering with my depression do you really think I could eat cake without beating myself up for the extra weight I would put on as, like I said above, I get fatigued walking and so can’t train it off?

I rely on benefits to continue paying my mortgage but I have not missed one payment ever. Yes it’s true I’m not working at the moment but I don’t enjoy being this way and certainly don’t see it as a lifestyle choice. My teary, irritable, angry, frustrated, sad, overwhelmed person is just not ready for a workplace at the moment.

I never did “swoon elegantly”, I did have some awful seizures brought on by depression and anxiety. The fact you dismiss the possibility of being affected by mental illness because “the children would only proceed to ignore it anyway” is a terrible insult to the many people I have met with varying degrees of mental health issues who continue to fight their various demons while raising a family, running a home or even those trying to avoid intentionally hurting themselves just to feel something.

My intention is to get through my mental health issues as well as my fibromyalgia etc. and anyone who has encountered me will know that, despite the fact I’m in a very dark place and face a daily struggle to go on, “throwing in the towel” is not an option I have taken. Fair play to you taking some time for yourself and switching off at times but do you have to call it a “pity party”?

If you have been lucky enough not to experience a family member or friend suffering with mental health issues then you are indeed very lucky. Because it is only someone completely innocent of these issues who could say that before they “drop out of life for the day” they “have to make sure that the other one has landed safely on the other side of Neurotic Bay before taking off on an excursion (themselves)”.

I imagine you feel that by saying “a full-time nervous breakdown has had to be put on my to-do list for the future, along with……………….trying hard to stop being such a sarcastic, unfeeling cow.” exonerates you from responsibility for your words. Excuse my french but that is bullshit! Somebody struggling with their mental health never needs much to be drawn back into a well of difficulty and despair. I was right on the edge yesterday and thankfully I made the right choice but imagine I hadn’t. I hope that having spoken about my upset at your article yesterday, my friends and family would realise the part that your inappropriate and bullying piece about people who “have instant permission to be as wrapped up in (their) own little world as (they) want” played in that decision.

Words have the ability to carry huge weight and this is especially true when those words are aimed at a group of people who are already in turmoil and struggling to cope. It’s important to be careful with the words, language and tone that are used in any article. I’m so disappointed in this piece below and my thoughts are with anyone else struggling at this time with their mental health.

Just before I go, does anyone have any idea how to get across Neurotic Bay? I didn’t realise all I had to do was get safely to the other side and I’d be well again.

Take care.

Fibrofella

mental2

Getting The Royal Treatment

I’ve had diagnosed Fibromyalgia for nearly two years now. Up until that point my options for treating any medical issues were very straightforward. If I injured my knee on a football pitch, the ambulance brought me to hospital and after the A&E team did their thing, I returned to see any consultants I was told to. If I had a cold, I reached for the Lemsips and rode it out. No matter what was wrong, there was always an obvious person to go to, and they fixed it.

In so many, many ways fibromyalgia has changed my outlook on lots of things and it has taught me to be patient and open in dealing with it. My fibromyalgia affects every system in my body and so the number of doctors and medical professionals I have visited is massive. There is no one thing that will fix me, there is no one doctor who can cure me and to manage my fibromyalgia in the best possible way, I have to combine the skills of ALL the medical folk and get on with things as best as I can.

After being referred to 8 or 9 consultants I’ve got used to the idea that the best way to treat my fibromyalgia is to take a multi-disciplinary outlook. I’ve also got used to friends and family suggesting people I should see, diets I should follow, exercise programmes I should engage in and supplements I should add into my daily routine. I like the fact that I have people who care enough about my well-being to pass on something they have heard or read and I never dismiss any suggestions out of hand.

That wouldn’t have been the case 3 or 4 years, I was so used to treating ailments a certain way I never wanted to stray from the obvious and take a chance on a different form of treatment. As I said that has changed because fibromyalgia stops you in your tracks and the only way to manage it successfully is to take a holistic approach and try to treat the whole body. This is especially important for me because of all the ways fibromyalgia interferes with my body.

Many people find alternative therapies very good for relieving pain, stress, muscle, tension etc. and I have to say I did too. I tried both massage and acupuncture and found great relief from both. Unfortunately these treatments don’t come cheap (or cheap enough) for me to afford to include them in my long-term treatment. I will always need to take medications to treat my fibromyalgia but massage in particular was a really enjoyable way to improve my symptoms. As a result I’m always trying to keep my eye out for an affordable treatment that I can use alongside my medications to improve my situation.

This led me to an interesting encounter yesterday.

There are many vitamin and mineral supplements people take every day and while they can have benefits, I can’t find the room in my budget for the magnesium, the vitamin d etc. that may help me out. I was however given the number of a famous herbalist in a neighbouring county. The initial consultation fee was extremely reasonable and with my newly open mind in tow I set off for his clinic yesterday. I did however have to cross the border into County Meath, the ‘Royal County’, luckily passport control let me through this time.

I filled in my details (why is the area for writing your illnesses and treatments always so bloody small?!), and waited to be called. I met with a really friendly woman who listened to my medical history, checked my ongoing medications and asked about my diet and levels of activity at the moment. I can safely say the medications took much longer to talk about than my activity levels!

After the consultation I was prescribed some mad looking beverages. These will hopefully, in time, work alongside my medications to increase my energy levels, improve my sleep quality and protect my immune system. Despite appearances they taste pretty good, in fact one of them tastes a little like iced tea which I’ve acquired a taste for over the years.

So here I am; one of the biggest sceptics in the world opening himself up to the possibility that a herbalist could help in the fight against fibromyalgia. I’ve got three weeks’ worth of these drinks to get through and then I’ll return to the clinic for a consultation with the main men himself. ‘Nothing ventured, nothing gained’, but if you’d told me 5 years ago I’d be seeing a herbalist I would have dismissed you without hesitation. A little dose of life and reality will humble even the biggest sceptics. 

So wish me luck and I’ll let you know how this latest experiment goes. I will give it enough time to see any changes it may bring; I just hope I can afford to keep going with it if the benefits are obvious. In spite of any improvements it may bring, it is unfortunate that the final decision will not be made on its’ effectiveness but its’ ongoing cost.

Keep Those Elbows Up

When I was younger and my Dad would bring me to Croke Park, or any stadium, for a big game he would remind me of something as we would be leaving the ground; ‘Make sure to keep your elbows up’. It was a simple piece of advice but the best way I could avoid being overcrowded, and keep some personal space, as we would leave stadiums when I hadn’t grown into my 6 foot 2 inch frame. Travelling on a commuter train at peak time into Dublin always remind of those days. As soon as the doors open, and often before people have got off the train, there is a rush of people to get on and get a seat. It is very easy to find yourself out manoeuvred by more experienced train users so it is important to keep your wits about you.

In fairness these commuter trains bear no resemblance to the pictures we have all seen of over crowded trains in China or India for example, I’ve no idea if I’d cope in those places. I’ve been forced back on the train for the last week until I get my car back up and running. I spoke in The Perfect Metaphor about the unpredictability of flare ups for myself and my little jam-jar. Well she is experiencing one of those flares at the minute and she can’t return soon enough for me. As a result I’ve been forced to make a couple of trips by public transport.

First up is the walk to the station. Anyone with fibro will understand that we only have so much energy to make it through each day. Getting up a little earlier and having to walk to the station obviously takes up more energy than stepping out the door and into the driver’s seat. By the time I make it to the station I’m already tired and I’m already sore, it is not a nice way to start the day. So when the train pulls in, my desire for a seat is huge. I want to rest my limbs but maybe also to close my eyes and try to restore some energy on the journey. So my Dad’s words jump to the front of my brain, I’m all consumed by finding a seat and getting there before my fellow commuters.

This is where the main problem of being a fella, having your car out of action and having to the take the train starts to become a serious problem. You see, as I said above, I’m now over 6 foot tall, I’m in my twenties and I can scrub up pretty decently every now and then. So when I spot the one remaining seat and start to make my move to capture it, I’m faced with a dilemma. Coming from the other door in the carriage and equidistant from the seat is a ‘little old lady’ with a wheelie trolley behind her, a stooped gait and a tiredness the whole carriage can see. I have fibromyalgia but first and foremost I’m a fella and with great thanks to my parents I think I was dragged up very well.

Despite my pain, fatigue, numbness, burning hands blah, blah, blah, there is no way in hell that I will force my way into the seat and leave her to stand. I’d love to suggest a game of ‘illness top trumps’. This is my new favourite game, it basically involves listing, one by one, all your different conditions and whoever runs out first loses. I fancy I’d win against her but I’d be judged by every single person on the train and so I gentlemanly step aside and will someone, with all my heart, to get up from their seat or better still get off at the next stop.

As we all know fibromyalgia is an invisible illness. No matter what torrent of symptoms we are experiencing, very rarely does our body betray this to the world. So positioning myself where the train doors open I can usually guarantee that, with my elbows up, I will find a seat for myself. You might imagine that I can then relax but in fact being in possession of a seat on a crowded train is a dangerous game to play. When I’m tired and sore I can struggle to concentrate on anything, so I never listen to music or read on train journeys as that would use up vital energy stores.

As a result of this other train users are faced with the following vision; a six-foot two-inch fella in his twenties forces his way to the front of the queue to get on the train as quickly as possible. Once there he sits down, looking well, not using any book or electrical device to distract him and stays seated while all other travellers of all age and condition get on and stay standing. That could happen but it doesn’t really, no matter how I feel I will offer my seat to anyone of a certain age, pregnant women or anyone with a visible problem.

Look back at the last four words of the previous paragraph. That is really the beginning, middle and end of this post. Due to fibromyalgia and its invisible nature the rules change for all of us when we use public transport. We have no outward way of telling people that on that particular day we are just as entitled to a seat as a pregnant lady, an older person or anyone else who would be offered a seat on public transport. Fibromyalgia is a perplexing condition and while there are days we are in dire need of a seat, there are also one or two days when we might be able to stand.

This situation has only been brought home to be over the last week as I’ve been forced to use public transport to attend a couple of appointments. Outwardly I looked the picture of health both days and on the first I felt ok too but by the second journey I was so exhausted I made sure to get a seat and used my thick skin to ignore the pointing, whispering and judgement of those who doubted my need for a seat.

A car is vitally important to me. It guarantees me a seat for starters but it is much, much more than that. Not wasting energy getting places by public transport means my depleted energy stores can last a little longer and reduce my tiredness. This peace of mind helps me in many ways. If I can drive somewhere I can be more alert and functional at the doctor’s appointment, my voluntary work or if it’s just out with my friends. It also allows me to exercise and walk for training purposes rather than walking too far getting places.

A wise person once said (it could’ve been a fool, I’ve no idea who said it first!) ‘you don’t know what you’ve got ’til it’s gone.’ My car gives me freedom that disappears once I’m forced onto public transport, I’m so tired already and it has only been a few days. I hope I don’t have to be car-less too much longer because it won’t work in the long run for me. If I’m to be, in any way, a functioning person and not merely a fella at home with an invisible illness I need my car back.