With every story of chronic illness comes a side order of mental illness. Some people, of course handle their situation better than others, managing to hold down a job and healthy relationships etc. For some however, the struggle to find that ’light at the end of the tunnel’ that everyone keeps talking to them about, from the minute they’re signed off with a medical certificate for more than three weeks, becomes a constant battle with lining up the pills in pretty patterns next to the vodka bottles. Of course there are many of us that are in between the two ends of the spectrum.
The past week has ‘Stop the Stigma’ week; a week aimed at raising awareness of mental health issues set up by a small group in the US and it has spread via social media. I’ve decided that now is the time for me to write this blog although it has been fluttering in the cobwebs of my mind for a while. https://www.facebook.com/pages/Mental-Health-Awareness-Week-2015/1392190864384089
This will not be an easy blog entry to write and therefore I want to warn you now that it may not be easy to read. If you are a stranger, then I hope it makes you stop and think about someone that you do know with a chronic illness and maybe make you reassess how you may respond to them or interact with them. If you’re a friend or family member then I’m sorry if anything I write in this blog is upsetting; however, the point of this is that by sharing my story, my vulnerablity, that more awareness of mental health issues are raised. It will take courage to write about some of the content of this post, however because I know my children can google this blog anytime they want, I will have to use some self censorship. I am terrified of what starting this blog is going to bring up and how I’m going to handle it but for now I’m going to sleep on the ideas that are starting to formulate……
Firstly, let me say that I am not an expert in mental health issues, nor have I suffered particularly badly with them myself. I had a brief spell of post natal depression where I suffered with panic attacks; these were diagnosed by the midwifes, as the attacks started whenever I left my second son in SCBU and went away from the hospital, even for the briefest time. The diagnosis was a relief, because they thought it might have been a pulmonary embolism due to complications after delivery. However, after we all got home the symptoms continued and worsened to the point of my GP immediately referring me for counselling. I developed a good relationship with my counsellor and her technique worked and I was soon cycling to the appointments and rebuilding myself. I was given the standard NHS 6 sessions but that was enough for me to get my life back on track so that I could look after my children and be a happy wife and mother again.
That was my first personal experience of mental illness but I grew up around it even though it was something that wasn’t really discussed. Well, I remember being told about things that had happened, those things still haunt me now, but not understanding them. I won’t go into these events as I don’t have those people’s or their families consent. I can however tell you that I remember some incidents making me feel like I should be able to do something to make it better or ‘fix it’ or that it was somehow my fault. As I’m sure you can imagine I am now a ‘fixer’ and have a very high tendency towards feeling guilty. Interestingly, a counsellor I saw at the beginning of this 16 month long nightmare of a migraine/headache/iih thingy, told me that guilt is “being angry at yourself because you can’t be angry at anything or anyone else.” I still feel guilty. I probably even feel a bit guilty that I never went back to see that counsellor. The thing is it left me in bed for 3 days afterwards in agony from the journey (25mins) and the talking (1hr), so I deemed it a pointless exercise in the journey to my recovery.
So you can see that I have already experienced counselling and have found it a useful tool. I think that everybody with any mental illness should reach out for help because there is a lot of help out there. I am very lucky, in that my GP practice, has a counselling service that runs from it’s practice and that because I am a teacher I also can access counselling through my work occupational health support agency.
However, since my first encounter with the counsellor I decided that I can do this without any extra help! My support group friends cannot believe that I am not on anti-depressants! You see, most people that experience chronic illness, also suffer from mental ilnesss. In fact, it is a common belief that migraine is actually caused by stress. There is actually not enough evidence to know the cause of migraine, as despite it being in the top 4 of the world’s most disabling conditions, it has very little money spent on it to research causes and cures. Stress can be a trigger, just as a post stress comedown can be (this is one of mine) as well as chocolate, caffeine, tomatoes etc… In fact, anything can be a trigger. It is an individual thing.
There is also very little research done on IIH but for a different reason, this time, because it is so rare! However, on forums and the support groups, it is clear that most people find that stress raises their pressure and therefore increases their pain and other symptoms. In fact, crying and laughing often come up in forums on migraine and IIH sites as discussions about how these acts can increase the pain. I have looked on the internet for research with regards to stress and IIH and cannot find any. I understand it to be the physical impact of raised blood pressure, increasing stress on the vessels to the brain could worsen symptoms of IIH.
So you can see that there is a link between worsened symptoms due to increased stress but what about stress causing these conditions. Well as I said, it is unknown what causes migraine and it is the same with IIH. IIH stands for Idiopathic Intracranial Hypertension and Idiopathic means ‘of unknown cause’. However, many people both professional and otherwise still believe that stress causes migraine and IIH. When I was first unwell with migraine, the first neurologist I saw suggested that working 4 days was too much for me. However, a couple of years beforehand I had managed to work full time with low level migraines and in a school where I was very unhappy and cried most days on the journey in to school. (I probably should have been signed off with stress but still….) I soon left the school and went to a school where I was really happy and that’s when the migraines started to get worse…. There’s no telling is there. Anyway I soon had to encounter an Occupational health assessment. I spoke to the occupational health nurse over the phone; her exact words were “you couldn’t possibly be off work for 3 months with just a headache”! At this point, I’d been diagnosed with migraine and that had been written on all but my first sickness certificates (the first said headache). She really tried very hard to diagnose me with depression in that phone call, telling me that my voice sounded monotonous and that I didn’t sound ‘like a teacher’?? If I had been depressed, I would have just admitted it, it’s not something to hide and that’s what I told her but she took a lot of convincing that I really did have unbearable headaches that meant I couldn’t walk for more than 5 minutes and that was the reason for me not sounding full of the joys of spring! My neurology nurse told me that I should “talk to my GP about my mood” when I burst into tears of frustration when yet again I was told that I needed to give the pills a bit longer to work (surely 6 months is long enough to know that something is not having a positive impact?) I have even experienced this attitude with the headache specialist, whom I begged for months to see, she suggested that even though I wasn’t working there was still a lot of stress at home; my children and all the housework. I couldn’t believe it. I had fought so hard to see this woman and her advice was to not get stressed out by doing housework (which Joel was doing at the time as well as working anyway); my kids (who make me want to get up and fight every day, who tell their friends they have to be quiet when they come to our house and are always complimented for being the most well behaved kids our friends have looked after)! She also told me not to eat chocolate, cheese or caffeine. Do people seriously get all the way to seeing her and not have tried that one already???
On the support groups I’m on there is often talk of depression and cries for help. It can be quite scary when someone writes that they are going to end it because they can’t take the pain anymore. The thing is we all get it. We all know what it feels like to want to get rid of that pain so badly we’d do anything. Of course, most of us would never do it, but that black dog of depression looms over us and invites us to take the easy way out. However, luckily those support groups on the whole are thereto help is get up and fight each day. The groups that have people constantly posting photos of their operation wounds and groups with passive aggressive members in are now not on my follow list. I simply cannot be dealing with groups that are constantly negative. I need to be in groups that support each other through bad times, but will them through the good times and applaud every victory each member has! A group where a member wants to post that they have had a pain free day is what I call an awesome group! We should be there to will each other on to health but also recognise that everyone may not be able to get back to health and be there to support them just as much.
Now, this is where I need to point out that I have never thought through an end plan ever! My husband and children are too amazing for me to be drawn in by those thoughts for long enough to actually plan anything. But, I have wanted to just get that pain out of my head somehow. When the pain you face almost daily, comes close to the same pain you suffered in childbirth then yes, you want an end! In childbirth, you get gas and air and an amazing baby and a heap of endorphins; I just get never-ending, vicious, ice-picking, tunnel-bearing, vice-busting pain!
So, how do I make sure I’m not constantly brought down by the car-crusher I like to think of as my evil nemesis! It’s there with me constantly, so I have to go into battle mode, no sleeping on my laurels. And it’s not just me. My family are affected too, aren’t they? We have to raise an army together. Luckily, we’ve always been a good team. Luca is the ‘defender’: He checks on me, he stands at the top of the stairs and coaches me up every teeth grinding inch of pain that is called the nightly mountain climb. He has embraced our family positivity jar and can always think of something to say and write when we share our positives at the end of the day; we don’t always write them down but when I dip in the jar I often pull out one of his that says ‘giving mummy cuddles’. Zeke is the ‘logistician’ always ready to suggest an easier way of doing things. “Why doesn’t mummy go upstairs now, when she’s less tired?”. He likes to know the facts of what is going on; he took in everything on the detailed skull picture we showed him when we tried to explain my warped mind and he often asks when the operation will be and what will happen. He likes to know the facts and finds it hard that we can’t answer all his questions. They have both got music to keep inspiring them, swimming to keep them fit and have been registered as young carers, so will be able to attend meetings and days out in the holidays with children in similar situations.
Joel is the ‘commander’; bold and fearless. He has taken on running a household, being my carer, being a fabulous dad and still holding down a high powered job with almost sheer ease. There have been a few bumps and, if it hadn’t been for Nina coming in as ‘adventurer’ ready to put her hand to new things and throw herself fully into the McKee family, we may have had a crumpled leader but he still holds his position well and keeps his sanity through his music. He has joined a band that gives him his own creative time and space. Now all we need is to get him back out on that bike! I am a bit of a ‘mediator’; often taking that role within the family and coming in to do my parenting bit when I can, often when Joel is at the end of his tether and when I should have started helping earlier. I have found new things to interest me and causes to fight by joining Mission Migraine and sharing my story for awareness. That has led me to realise the power of the internet and I share my journey about suffering with migraine and being diagnosed with IIH through this blog and more recently by starting the twitter account for Mission Migraine @migrainemission. Creatively, I have started to build myself back up again by beginning to make jewellery again. Exercise wise, I still love my yoga and Pilates and meditate daily and try and do simple exercises in my chair or bed when I can. Personality types taken from 16personalities.com
As you can see, we do a lot of positive things to try and keep healthy minds individually and as a family but we are all aware of the need for someone else to talk to outside of our situation if the need arises and I may talk about that in future blogs. We have done all these things as a natural process but I was interested to find this poster when searching for pictures for this blog on how to have a healthy mind.
Yes, we are living in survival mode but we are gradually rebuilding who we were before this illness came to join the McKee household. I want to say that my illness does not define me and I hope if you have a chronic illness that you can say that. Unfortunately, they do become all consuming when they take over every aspect of your life and relationships. I am gradually beginning to rebuild the Laura that was here before this illness came in and shook me to the very core, however, this Laura will never go back to who she was before. I think that that is a good thing. I have learnt so much about life, relationships and people through joining support groups, developing friendships, exploring empathy, deepening understanding of who I really am and who I want to be (I’ve had a lot of time to think), and developing love on a far deeper level than ever before with my husband who has guided me through the hardest moments of my life so far. All I can think is that this stands us in good stead for what is to happen in the coming months and that we have all these support networks in place already for when we need them the most.
Thank you for taking the time to read this post.