***Trigger warning, the following piece contains some references to suicide.***
Around half of all people with multiple sclerosis will experience depression at some time in their life. This is three times higher than for the general population. Part of this extra risk comes from MS damaging nerves in the brain, if the areas damaged deal with mood then mental health can suffer as a result. Another common cause is the experience of living with a complex disease. In his latest blog Ian Daly speaks candidly about his own experience with depression.
One sufferer’s thoughts. Opinions vary. These are mine.
Me, I have difficulty walking, standing, running (totally out of the question actually), concentrating, and occasionally seeing clearly. My fine motor skills are anything but fine. They are shot, at best slow and cumbersome, and at worst, well, the latest incident involved me throwing a large spoonful of spaghetti Bolognese all over the table, the floor and, for a maximum laughter hit, me. My partner, who is usually the epitome of supportive empathy, was paralysed with laughter for the best part of five minutes, whilst Bolognese sauce dripped from my face onto the floor. I have Primary Progressive MS, which is the MS equivalent of winning the lottery, all the symptoms, all the time, and always getting worse. Result or what?
Anyway, I’m supposed to be talking about mental health, aren’t I? I see lots of feel good pictures on social media and various other websites. ‘Be strong’ or ‘Never give up’. We MS folk, well some of us at least, refer to one another as ‘MS Warriors’ as presumably it’s a constant battle and we have a need to be strong just to get through an average day. Whilst personally, I have nothing against the ‘warrior’ term, I prefer ‘PWMS’, that’s ‘people with MS’. It doesn’t require me to be strong, or battle, or fight. I can just get through the day any way I can, which is good as most days I get about four hours in and I need a lie down.
During my, let’s call them my younger days, I’d kind of convinced myself I was a relatively strong person, both physically and mentally. My life went a bit south when a family member died, well it would wouldn’t it? I had a reasonably high-pressure job as a Service Manager in a large I.T. firm and this coupled with the death, lead to me feeling, initially a bit odd, somewhat down if you will. This feeling persisted through my return to work and finally peaked when I pulled up outside of work and burst into tears. To this day I have no idea why? I’d even found a parking space.
I suspect this is familiar to a lot of people, but at the time it was a bit of a shock for me. Anyway, I subsequently made an appointment with the Doc, got given a prescription, threw it in the bin on the way out of the surgery, and went back to life and work. This lasted two weeks. Two weeks until I visited the Doc again, and this time I filled the prescription and started taking the anti-depressants. Once the side effects were out of the way, vomiting, diarrhoea, headache and nausea, I began to feel better. Again, you would wouldn’t you. I took the pills for four years and then weaned myself off them over a period of about three months. Yippee, I was cured. I’d also learned a valuable lesson, actually several valuable lessons. Stuff sneaks up on you. Depression is very real and if you treat it, it will eventually leave you alone for a while. If you don’t treat it, it’s going to get worse. I’d treated mine and I was cured. Cured but, and this is the key, it’s not like Chicken Pox. Just because you’ve had it once, doesn’t mean you’re not going to get it again. I managed a good 25 years, occasionally feeling a bit hacked off but, you know, who doesn’t?
Depression is very real and if you treat it, it will eventually leave you alone for a while. If you don’t treat it, it’s going to get worse.
Then came the MS diagnosis, pretty much out of the blue, but following a period of pins and needles, falling over, and various numb bits covered elsewhere in other articles. The thing with depression is that it’ll sneak up on you, and if you’re not aware of the signs it’s easy to be well into a black void of intense misery and pain before your partner, or anyone else for that matter, notices there’s a noose hanging on your office wall and all of the knives in the house have been sharpened. Fortunately, this wasn’t my first rodeo and, as a dutiful and I like to think moderately intelligent patient, I elected to visit the new Doctor, new as I’d moved house, as you do in a period of 20 or so years.
Now there are online tests that you can do to establish if you are depressed or not and, so long as you get one from a reputable site and not Facebook or Fox News, they can give a reasonable indication as to your state of mind. Also, if you have suffered with depression previously, you know the signs and can hopefully take some sort of measures to improve your mental health. Go for a walk in the sun, ring a friend, read a good book, go see a film, you know all those things you can’t be arsed to do because you’re depressed.
Anyway, back to the Doctor. In any conversation there are hopefully a minimum of two people. In mine there tend to be three, me, the Doctor, and my inner voice. I suspect everyone, even the Doctor, has one. Call it ‘the voices’ or your subconscious, whatever, but it’s there. Actually, referring to it as ‘the voices’ has serious connotations and can result in a lengthy stay in a secure unit. You’ve been warned.
Any who, back to the Doctors.
Doc. How would you describe your mood?
IV (That’s inner voice). I’m freaking livid. I got here late, couldn’t park, had to walk half a mile in the pouring rain, and I’ve been up since four this morning. One more dumb question and I’ll drop you.
Me. Not good.
Doc. Any thoughts of self-harm?
IV. No more than usual. I’m going to harm you in a minute if these questions don’t improve.
Me. No more than usual. The Doc raises an eyebrow, completely misses the humour (well it amused me) and writes something on a small pad that I can’t quite make out. I consider asking but feel I may look overly paranoid and I’ve enough going on at the moment.
Doc. Are you sleeping?
IV. Of course I’m not. I haven’t stopped yawning since I sat down, and I have a leather saddlebag under each eye.
Me. Three or four hours a night at most.
Doc. Do you feel irritable, or do you snap at others unnecessarily?
IV. It’s not freaking unnecessary; they’re bloody halfwits and it takes all my already frazzled self-control not to run them through with a spade.
Doc. What do you do to relax? What do you enjoy?
IV. Jesus why am I even here? You’re asking me the same damn questions as the internet did.
Me. Drink Gin. I like drinking Gin.
The conversation then descends into the usual interrogation about units of alcohol, which to this day I refuse to acknowledge. It’s just some random number somebody thought up to stop us enjoying ourselves right? I’ve since developed a copping strategy to deal with this situation. I lie.
‘Just a small glass of wine at the weekend’
Back to the GP surgery.
Doc. I see you were diagnosed with MS six months ago. How are you dealing with that?
IV. Dealing? You’re kidding right? How the hell do you think I’m dealing with it? It’s depressing, I can’t walk and, on occasion when the pain is really bloody bad, the opportunity of not being here really does appeal although I admit that being dead is not really a long-term solution to pain relief. Well it is the perfect solution, but the side effects are bad. Really bad.
Me. As best as I can. I try to remain positive but it’s hard. I feel there’d be something wrong with me if I weren’t depressed.
This joyous back and to continues amongst the three of us for a couple more minutes until I’ve worried the Doctor sufficiently to give me some medication to prevent me killing myself. I appreciate this sounds glib and unprofessional, but I passionately believe depression, unless it’s appropriately treated, is going to eventually render you somewhat unconscious. Read the papers or look at the faces of the people in the Doctors waiting room when you go. If they’re not there for pills to ‘improve their mood’ then they most certainly should be.
MS must be a truly awful disease if you’re a lively happy, enthusiastic, individual who enjoys arranging flowers, playing with trains, or hiking with poles (the sticks, not Polish folk). I suspect it eats away at your enthusiasm with its relentless exhaustion, fatigue and debilitation until you just can’t bake another cake or march up another hill. Again, with the glib comments. But it’s not glib you see. If you’re the sort of person who is what some company’s call a ‘team player’ or your enthusiasm levels are at a constant 9.9 then the addition of a crippling neurological disease could possibly tip you right over the edge with very little warning. It would have tipped me over. Fortunately, someone died, I got depressed, I took the medicine and felt better. I learned what depression is and some of the steps to deal with it. A healthy mistrust of mindless enthusiasm and corporate bollocks were particularly helpful to me, although I recognise this perceived negativity is not for everyone.
If you haven’t learnt that lesson, and in some ways, I hope you haven’t as its awful, then you are at risk. Add in a debilitating disease of the central nervous system and I respectfully ask that you give yourself a review from time to time. Download a test from the NHS website or ask a close friend for their opinion.
Do I seem OK to you?
Am I shouting at chairs?
Listen to their answer. Whatever occurs afterwards, I think you’ll be glad you did.
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