Mental health and the MonSter

I’ve decided to work my way through the list I made of different topics I could cover here. So since this topic got the second highest amount of interest I thought this one could be next and since I won’t be giving it to I can write as much as I want hehe.

So first of all I will say that I am probably not a typical case when it comes to mental health and my MS since I’ve always struggled with anxiety and depression but this will be my experience.

In the beginning….

Out of the blue I’m struck down with Optic Neuritis (ON). Obviously I didn’t know this at first and it took a succession of GP’s, A&E doctors, Opticians, Opthalmologists, more GP’s and finally booking in to see a Neurologist privately as the idiotic GP wouldn’t refer me for an NHS one.

He is a calming influence but my anxiety is already sky high, he books me in for an MRI scan and the anxiety makes the next few days before I have it pass in a blur of distraction techniques. When I speak to him a few days later he tells me that it is ON and that he wants me to go onto a day unit for steroid treatment next week, he’s managed to squeeze me in.

From Google: note the white spotches that are the lesions found in MS

Before I go I have researched ON and the uses of steroid treatments, the staff in that unit were fabulous, supportive and chatty, telling me that they were using a treatment that is for MS relapses but they didn’t think it was MS.

If anyone has ever told you that ignorance is bliss…believe them. I had studied neuroscience at university and as part of those studies I had learnt about MS leaving me in a position where I knew too much and yet nowhere near enough. I knew the worst aspects of this condition and quickly spiralled into a pit of despair at the prospect of what might await me.

I was on a short contract with no sick pay, I relapsed again when I returned to work and ended up feeling so guilty at letting my students down I gave up the position I had held telling the agency to get them someone more reliable.

Every time I saw the neurologist I burst into tears and bless him he didn’t cope with it very well. He wasn’t an MS specialist and ended up referring me to a different consultant who finally confirmed that I had Multiple Sclerosis. Putting me straight onto a DMD (disease modifying drug) as I had just had my third relapse in 6 months and having the MS nurses come out to help me choose one. The more I saw her the more she worried about me and pushed me to ask for help telling me that there was nothing to be ashamed about in feeling this way.

Over the next few months of medical hell, having no job for the next school year and no hope left in my world I was unemployed moving back in with my parents and losing what little respect for myself I had left.

The next year was torture, between physical problems, monetary impossibilities and my deteriorating mental health I lost everything that had mattered to me. I was no longer independent as I had no money coming in (benefits were a no go as I had a gap in my national insurance credits from my student days) I had to move back in with my parents and relied on them for transport, food and money.

I was in a house I had been ecstatic to leave as a teenager with nothing to do except watch bad TV and do cross stitch while avoiding my parents worried glances and pestering. I was no longer teaching, a career I had fought so hard to get into and loved even while complaining about how stressful it was.

I struggle to remember a lot of that year, certain moments are still there but my mind seems to have hidden a lot of those memories from me for which I am grateful.

During my appointments with the nurses to check on my progress with the Rebif I often broke down and they decided that the best idea would be for me to see the specialist neurology psychiatrists they were associated with. It took some time to get in to see them and in the mean time I saw a rather useless counsellor at my new GP surgery.

I was officially diagnosed with depression and put on antidepressants which after a lot of trial and error I finally found one that worked but didn’t give me serotonin syndrome or make me feel worse.

During this time I became suicidal, I had lost all hope and didn’t want to be in this body any more. I hid it from everyone but those plans, those thoughts of suicide were always there, if you haven’t read it go and meet Alice where I wrote about one of the nights I do remember.

The Liason psychiatry team were helpful though I think they struggled to deal with me, they thought I might be bi-polar and put me onto a psych ward for assessment. I was too scared to tell my parents this was why I was going in and ended up lying to them saying it was to play with some of my medication under observation. I still haven’t told my mum why they really wanted me to go on the ward.

I spent nearly two months on that ward over Christmas and my time there was one long mixture of going outside to smoke, stitching and talking to the other people on the ward with all their different problems. I felt trapped on that ward though the nurses and other staff were lovely I didn’t get the help I was expecting, no intensive therapy, no going outside to help me with my social anxiety, nothing other than a safe place to be. They let me out for Christmas day and I hated it, I felt completely dissociated from my family and couldn’t wait to get back to the ward the next day away from the pressure of family life though I did wish I could take Toby back in with me as I had missed him so much.

When I finally told them I had had enough and I wanted to go, I wasn’t staying any longer, I couldn’t cope with it any more and part of that was the lack of actual therapy I’d had, they told me that they thought I was Borderline and wanted me to stay longer for more assessments. There was no way at that moment that I would have stayed if they had paid me.

Now I don’t for a second think that the MS made me Borderline, the symptoms of BPD were there long before anything else. But the MS has brought everything to a head to a point where I have had to seek help to cope with my issues.

I blame myself for everything including my MS, part of me believes that I am being punished for something I have done, that all of my medical conditions are punishment for some indiscretion, something horrible I have done. My psychiatrist did try to counter this thought with me, she challenged it many times but I have to say she never succeeded in convincing me even though I faked a resolution to make her stop.

This MonSter triggers of feelings of worthlessness, frustration and anger with every exacerbation or relapse. It brings about the most embarrassing problems I have always dreaded and I have had to face them head on, some of which have made me stronger and more able to cope with them whereas others have left me psychologically stripped bare.

Unfortunately due to the nature of MS it is unpredictable and can affect anything in the body, this also includes the possibility that it can affect our emotions. It is possible that a lesion on the emotional centres of the brain can be the cause of mental health problems not as a secondary mental reflex but because it has caused a primary physical change in the brain and who can tell?

I have fought my way to the point I have accepted my MS as part of me, I may not like it but then there are a lot of my parts I’m not keen on. It has led me to a career I really enjoy that I may never have found if I had continued along my teaching path, I have a dog I wouldn’t have adopted and a house I wouldn’t have risked everything for if I had thought I was going to carry on earning the money I was.

I guess everything isn’t negative when it comes to MS it just feels like that sometimes and all I can do is keep plodding onwards 🙂


7 thoughts on “Mental health and the MonSter

  1. As you said that you won’t agree – but I also don’t think it’s your punishment for something you did… illness “just” happens and it can happen to everyone… it’s incalculable.
    This is a very brave post because you tackle all these difficult issues (e.g., having to go back to your parents [which is _my_ personal worst nightmare).
    I like how you point out in the end, that even MS brought something better into your life (Toby, the new career).
    Sending you loads of safe hugs xx

    1. Thank you, it could have ended up as a novel if I wasn’t careful which is why it felt a little bitty. I hated moving back in with my parents it was the last thing I wanted to happen ever and made everything worse for a while.
      I thought I had to put something positive in at the end or it would have just been too depressing! thanks for the hugs 🙂 xx

  2. Thank you for posting this. I feel like I know you much better. I am so glad that you have gained your independence from your parents again. I can fully relate to having to go back and live at home. I had to do that more than once. (((hugs)))

    1. Thank you 🙂 You’ll understand how good it felt to get away from them again even if I do now get a phone call ever day from my Mum (bless her she worries about me). I’m getting there with opening up on here about my past and it does help even when it hurts to write it. xx

  3. The diagnosis of MS can often take years, and others frought with ineptitude of the highest degree. Sorry you had to experience it that way. I agree, MS isn’t the worse thing that can happen to you, but it sure makes life difficult. The hardest part is it’s unpredictability. I’m sort of waiting to find out exactly what life lesson MS has to teach me. So far I’ve mostly been humbled by it.

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