I am going to let you in on a secret, I don’t shit rainbows or unicorns. Nor do I manage to spend everyday with a grin plastered on my face. Life with chronic illness is not something I tend to smile about and yet again it seems the old disability porn meme is doing the rounds on Facebook. The one that says “the only disability in life is a negative attitude”. I would love just one of these idiot posters to spend 24 hours living my life and see how positive they feel.
I have been staring into the abyss for a while now, for a few months I have been trying to kid myself that my mood would get better, that I would indeed get a good nights sleep and things would improve. I have practiced every self-help technique I have ever been taught but currently I seem to teeter between a feeling of raging premenstrual syndrome (ANGRY RACH!) or sadness, the kind that makes your heart ache. I would love to be melodramatic and say I have spent days in tears, I haven’t, I don’t have the energy for it. I did have a couple of days of easy tear shedding a few weeks ago when hubby was on holiday and that was only after I confessed to how bad mentally I was feeling.
I have written about my battles with depression before, I had smugly thought that I had won and I would never end up back there. How wrong I was. Since August I have faced a battery of testing, a muppet of a consultant (the one that told me I was spending too much time on the internet looking up syndromes to have) and a new diagnosis to add to my ever-growing collection of the ones I already own. It’s funny how the diagnosis or a new diagnosis can send you closer to the edge than you’ve been in a while.
The absolute icing on the turd cake that is my life, was finding out that my driving licence had been revoked due to the diagnosis of Meniere’s disease. Despite the fact I get several hours notice of the attacks because they aren’t under control I am deemed no longer safe to drive. It grinds my gears (pun intended) that I know that there are many people out there driving who haven’t informed the proper authorities of their medical conditions. I know the DVLA are very hot on vertigo / blackouts now due to the terrible tragedy last year in Glasgow, where a refuse lorry driver crashed into pedestrians killing six (more info here). I understand why I am not allowed to drive, it doesn’t mean I have to like it.
Lack of sleep has also had a detrimental effect on my mental health. I haven’t slept properly since 2011 when hubby had his accident ( a drunk driver hit him, when he was on his way to take the dogs out). The crash also left me with a lot of anxiety whenever he has to drive anywhere alone, oddly enough his journey to work doesn’t bother me, just everything else. I am a bag of nerves whenever he leaves the house and make him ring me when he arrives at his destination.
Pain has also been a major cause of lack of sleep, I tend to get breakthrough pain because I don’t move around very much whilst asleep (as in changing positions). Up until recently I was lucky if I got 4 hours at a stretch most nights, once every few weeks I would sleep 10-14 hours and end up feeling worse than after a 4 hours sleep. Not sleeping drags you down, it is terribly lonely being the only person awake for hours on end. Waking up at 3am means it is a very long day and there is no evening for me as I am back in bed by 7pm and most nights asleep by 8pm.
All these things combined meant that no matter how hard I tried I just couldn’t lift my mood. I am a consummate actress around friends and family, no one would really know how bad I felt inside because for the short time I spent with them I could pull off my usual wise cracking self. If anyone suspected I wasn’t my usual chirpy self it could be passed off as feeling rough or being in pain. However I knew things were getting bad when I no longer really wanted to talk to anyone outside of my family. I have a habit of withdrawing deep inside my head when things are tough. I don’t make an effort to socialise because I can’t be bothered to pretend that everything is ok. I put off visits from friends and basically become pretty shoddy at staying in contact with people. Even with hubby I start to get very quiet, mostly because I don’t want to snap at him because the issue isn’t him its me. In the grand scheme of things what does it matter if certain jobs haven’t been done by my self-imposed deadlines? I become frightened to speak as I may give myself away. I hate feeling like a burden to people. Over the last few months I have felt more and more that I couldn’t ask for help until one day I couldn’t suppress it any longer.
When you have lived with depression, you learn the danger signs. They can be very subtle and can take you a little while to pick up on them but they are there. Mine started with getting less and less sleep, then the feeling of sadness crept in, one that wouldn’t go away. Then I start spending money to cheer myself up. It is usually gifts for others as if I alone am not enough to please them. Then the self loathing starts with a vengeance, I start feeling like I am a failure because I have put on weight (comfort eating and wacky hormones), ugly because of the new facial hair that has sprouted and the teenage skin I suddenly acquired. A failure in so many ways that my inner voice of criticism literally doesn’t shut up from the minute I wake until the minute I go to sleep. It is a lonely place inside my head and it seems so stupid to retreat there but then that’s depression for you.
Thankfully I have identified the signs early, probably the earliest I have ever done so. I would class myself as mildly depressed, there are no thoughts of suicide or self harm but eventually they would have surfaced if I had let it go on much longer. I have visited my gp, who I think would have guessed this was coming as on the last two telephone conversations with him I have ended up in tears. He has placed me on an antidepressant that is known for its sleep inducing qualities. I have only been on it a few days but I am already experiencing better quality sleep, the kind where you wake up and feel like you have slept. My mood has lifted a little, which could have been caused by sleeping better as the medication isn’t supposed to reach its full effect for 7-14 days. My gp did say to me he felt with a few decent nights sleep it would take the edge off and it has. When you haven’t had a refreshing night’s sleep in 4 years you forget what it’s like. I have been waking up in the morning and not feeling groggy. I can’t remember the last time I felt like that on waking.
I have to go back and see the gp in a couple of weeks, a basic check to see how I am feeling and if the medication is working. I have been told to ring him immediately if things aren’t going well. Things are ok, is all I can say at the moment. I am hoping in a few weeks I will be able to say things are good.
It’s very difficult when you have a chronic illness to be able to address depression by the normal self-help means diet and exercise. Mobility issues and pain mean all but the gentlest of exercise is completely out for me. My diet is very restricted and when you feel depressed you can end up bingeing on junk food in an attempt to make yourself feel better for the short amount of time you are eating it. At the moment I am not feeling like eating (probably the new medication) nothing makes me think “oh I fancy eating that”. I am still hungry but the desire to eat has gone, which for me is good as I don’t want to end up bingeing all the time. I have to eat three times a day due to the Betahistine so I force myself to eat then. The pleasure of eating has temporarily gone and I am ok with that.
One of the main reasons I shied away from asking for help from my gp was the stigma I have faced in the past with having mental health issues on my medical records. Too many doctors when I was struggling for a diagnosis saw the issues from ten years earlier and decided that my illness was psychological and not physiological. I didn’t want that happening all over again however there came a point where I realised I couldn’t keep trying to soldier on. Nothing was going to change unless I got help.
So I urge those of you who are struggling right now to ask for help, there is no shame in saying you need assistance. Chronic illness is a lonely world to inhabit, many of the things that get me down can’t be changed but I can learn to adapt to a new normal.