Depression, Covid and the search for happiness

I’ve deliberated over the past week about whether to write this post and still am not sure if I’ll actually post it.

Depression is something that I have had to deal with in my family since I was old enough to remember, and something that I have personally suffered from since I was 20. For many years, I fought it, hid it and didn’t really talk to anyone apart from Nick about it. Now it is something I possibly share too readily, but I make no excuses for that as mental health can literally be life or death for some people.

When I was 20 and at University I hit a real low. I still to this day don’t know why, but I spent days and days going to lectures and work, and then getting home and hiding away in my room, refusing to talk to any of my housemates. It took Nick, on the eve of my 21st birthday to begin to pull me out of it. We weren’t together at the time, but he was the only person I was able to talk to….and he is still amazing at getting me to open up when I don’t really want to. It didn’t go away overnight, and it wasn’t the happiest 21st, but I didn’t feel alone. The black void had turned slightly greyer and felt like it was something I could start to manage.

Photo by Eduardo Vázquez on Unsplash

My next major depression was after I went back to work for the bank after I’d had Sam. I tried to go back 3 days, but Sam was quite poorly on a regular basis and if I’m honest the bank wasn’t good at dealing with that. On top of that, they were quite untrusting that I’d make up work, even though I always did. I fell into another depressive period then, and ended up, at the time, much to my disgust, on antidepressants and signed off work for 2 weeks. I felt like a total failure. I can’t believe it now, but I think I’d been brought up to think that depression was an attention seeking behaviour and that drugs were just a cop out. And people who went off sick, (good god I was working in an HR department), well that really was just taking the mick out of the company and couldn’t truly be real….could it?

To this day, I think that the way I was handled over that period may have been the factor that kicked my myeloma into play (I eventually handed in my notice when they said they couldn’t give me 2 days…although they found a way to get me back on 2 days on an auxilliary contract straight after…without the life insurance that might have helped me with my myeloma diagnoisis).

Since my diagnosis of multiple myeloma back in 2009, I have struggled quite a lot with depression, on and off. Not often with really black holes, but definitely lots of grey ones. I’ve had counselling on and off which has helped although my best counsellor is often Nick. I’m permanently on antidepressants, and whilst I occasionally try to reduce them, to feed that ingrained fear of failure, I know in reality that I am on them for life. I think that all my hormonal changes from early menopause from myeloma treatment probably impact on that and so in reality I know it doesn’t matter that I’m on them. They help me so much, to the point Nick always knows when I try to reduce them as he can tell, literally within a couple of days, that my mood has changed.

So, what about this moment? I said that this post was about depression and covid. I’m definitely struggling at the moment and finding it very hard to be positive about most things at the moment. I know that I have it very easy in comparison to many, but this is my journey and my feelings. And I’m hoping that by writing this it helps me to validate my feelings. So what is it that is getting me down? There’s a few things I think:

  • Coronavirus – obviously everything that is going on at the moment is impossibly hard for lots of people at the moment. Especially those with no support, those who are extremely vulnerable like me, those in cramped spaces or those who are losing their livelihoods. We’ve been shielding (and at times isolating) and it’s been hard. Hard not to pop to shops, not to see people until recently, and even now, not being able to see larger groups yet. With some people criticising us for even going out for walks (before the recent change in guidance) that has played on my mind and I constantly find myself trying to justify our behaviour, our ‘flouting’ of guidance (hmm, yes having more than one person socially distancing in our garden!) and when we allow the children to have one friend over at a distance. But I think the fear of how long this will go on for, and how long we will have to shield for, is the biggest concern.
  • Link between Coronavirus & Treatment As much as I trust my consultant implicitly, I am finding the fact that my treatment is on hold really hard. I am worried about so many aspects of that. Whether it will mean that my numbers start to rise (bad), whether that might mean I need a new, challenging form of treatment, whether I might relapse altogether, whether I might not be allowed my Stem Cell Transplant and when any or all of this treatment is going to actually happen. Should I try and go for it all now while things are so difficult anyway, and take that risk that I’ll be more at risk of coronavirus when I come out of the hospital? Or should I wait and risk all the things I mentioned before? I have written to my consultant and he’s looking at timelines for me to try and remove a little of the uncertainty but I’m not sure how much of it is in his hands.
  • Impact on Children – This is one of the areas that I find the hardest to get my head around. I am so proud of both of our children. They have lived with my myeloma in such an amazing and proactive way. Despite the fact that they are often, understandably worried about me, they are such independent and strong minded kids. They don’t moan about what life with myeloma means for them or the limitations it imposes on them…and I can promise you now that there are many. Even now, having shielded for 13 weeks, being taken out of school early, and now, Rebecca not being able to go back despite being in Year 10…they haven’t complained once and are really matter of fact about it all. I worry though about what September looks like as they can’t be kept off past then. So how we keep safe with them back at school is beyond me. I don’t feel that they will be going back to school anything like it was before either. What about clubs? Do we stop them from those too? And then not only will they be behind in their social and educational progress, (something I know I can’t do anything about), but there is then the chance that I’ll disappear off for a transplant causing even more disruption in their life. In the meantime, are they really meant to go 6 months without really seeing their friends.
  • Impact on Nick – I mention Nick after the kids but I probably should put him first. But he is so practical that whilst I have no doubt that he struggles in his own ways with everything he is trying to hold together in the family, he somehow manages to deal with things (most of the time!). But I do worry about how it impacts his decisions on his work, and how he spends his own time. He often ends up having to pick up the pieces that I leave behind when I am ill/ tired/ depressed. He does it without complaint but it must have an impact on him. I so love him for it but wish it could be different
  • Injuries/ Pains/ Side Effects – I think at the moment things are even harder because of all the injuries and issues I’m trying to manage. One broken foot, one painful foot (possibly hairline fracture – self diagnosed!), a knee that keeps clicking out of place and stopping me moving for half an hour, painful wrists, regular bowel issues, eyes with cysts on them and a fat body!!! And that’s all I can remember for now!
  • Work – I don’t know whether I should get back to working or not….if my transplant is months away, perhaps I should – I hate not contributing financially. But then if it might be sooner, there is no point and I’d only let clients down. I keep wondering about doing online training but training big groups isn’t my strength and I’m scared of failing – another historical scar!!
  • House DIY – This is the least of my worries, but is still there. We started lots of work on Rebecca’s room and Nick’s study before lockdown and it all came to a standstill, unsurprisingly. We’ve moved on with work outside which is great, but the work on this house is never ending and one job seems to lead to another. There is so much outside painting to get on with, and with my boot I can’t even get up to reach many areas! And I’m also worried about the indoor work being outstanding – I won’t be surprised if we end up in another lockdown and then will it ever get finished? Finishing it would also give us an isolation room for the kids if needed.
  • Bloody politics – I don’t trust any of the politicians at the moment to be doing what is best for us as a country. They’re all in it for themselves and that is super scary.

So now that I’ve written that all out, perhaps it’s not surprising that I’m finding life quite difficult. I’m not quite in that rut that I’ve been in at my most depressed, but I’m certainly not in a happy place. I can only imagine how many other people out there are having similar feelings too. That lack of control, worry about the future and concern about what life is going to look like after 2020. Part of me now thinks we should give up trying…what is the worst that can happen? I probably shouldn’t admit this feeling, but part of me genuinely wonders whether if I did end up in that ‘not to be talked about’ position, that wouldn’t it allow everyone in my family to lead a more normal life moving forwards. No more trying to wrap me up in a bubble.

I think it is that thought in particular that makes me realise that I have a real issue at the moment. I think I might look at increasing my antidepressants. I hate having depression. I hate feeling that I shouldn’t have it. I’m lucky – I have an amazing family, and great friends. But that doesn’t seem to stop anyone from having it.

So, if you’re struggling, I understand. I’m not sure right now I can help, but I’ll always try. And even if I can’t now, I promise I’ll remember when I’m feeling better. Be kind, support friends and try to understand even if you don’t fully know how to.

And for those of my friends I haven’t been there for recently, I truly am sorry. I just don’t think I’d be much company. Please don’t feel the need to message after this post. This isn’t attention seeking….I just wanted to share that depression is real….and that it’s really difficult.

About Deb Gascoyne

I am wife of one, mother of two (& a dog!) and a person in my own right😊. I have used my diagnosis of myeloma to allow me to focus on what I CAN achieve and not what I can't. My blog is a way of me spilling out....it is for me more than you I'm afraid. But if it helps you along the way, that is an absolute bonus for me :-) Diagnosed in 2009 with smouldering myeloma, I started treatment in 2010 and had a SCT in 2011. I’ve been on maintenance since then until November 2018 but my figures went up so am now officially relapsed and have just started DVD treatment (July 2019)
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5 Responses to Depression, Covid and the search for happiness

  1. alexbicknell says:

    When first diagnosed, I read something about symptoms of hypercalcemia that listed them as bones, stones, groans, thrones and psychiatric overtones. That’s always made me laugh – with all the physical symptoms of myeloma, who the hell wouldn’t find it challenging to their mental health? That said, the issues you list are all rational and real – it’s not illness to have real fears. I’m lucky I don’t have to worry about some of the treatment decisions you do, But I very much share the worries about September.

    But the “they might be better off without me” thing… you know that’s not true don’t you? For a period a couple of years ago when I restarted treatment, I got really depressed, which is very unusual for me. Decided in the end it was the thalidomide that caused it. In the midst of it, I told my counsellor that my family would probably be better off without me. And her response really shook me – I can’t remember the words, but it felt like it came from a very careful script at counselling school. What she’d learnt in the “what to say to someone standing on the top of a building, threatening to jump” class. It made me realise that I was not being rational. Not that that made it any easier – and I only got better when I came off the drugs – but at least it gave me a reason to avoid letting myself be alone in potentially dangerous places, for a while. They wouldn’t be better off without us. Regardless of the baggage and compromises we bring. They’re all much happier having us around, while we can be. Stay safe, Deb.

    As for not getting off the pills… I’ve decided it is pointless self denial for me to try to come off the oxycodone. I’ve got it down to a low dose (I know I’ll need more when I relapse), but stopping the last bit is more grief than it’s worth. Heavens, we pop enough pills – plenty of them toxic – we definitely shouldn’t castigate ourselves for the ones that make life easier. It’s a form of victim self-blame – we should be kinder to ourselves.

    Liked by 1 person

    • Deb Gascoyne says:

      Thanks alex. You’ve made me cry. It’s all true and I think I do know that in my heart of hearts…probably why I could even write the post.
      I’ve upped my dose tonight…just half a tablet but it’s a start. As for the rest…I’ll just have to wait and see what happens I suppose. I just feel so anxious at the moment about it all. Hopefully the pills will change that a little.
      Thanks for your support…as always. Wise words.
      Take care of yourself.
      X

      Like

  2. alison.drackett@hotmail.co.uk says:

    Dear Deb
    I have followed your blog posts since my own diagnosis and admire your ability to set on paper (!) the struggles and joys of your life.
    I only have a second hand understanding of depression as my daughter lives with it daily but I know it is nothing to do with not having enough inner strength or appreciation for life.
    I think you express for so many of us (Myeloma sufferers and lets face it most people in general) the mental burdens that are just magnified by this Corona crisis. To go through all this with that mangy ‘black dog ‘ dragging you under as well must be so exhausting on every level
    Deb you know your family and friends love you, but just as importantly you love them and nothing will ever replace that in their lives.
    I hope upping your meds helps you feel better soon and that you see some light in the darkness,
    Best wishes
    Alison

    Like

  3. Francis Kelley says:

    What can I say other than thanks. You are a very special person to me and my wife even though we only physically met once at the QE. We admire you enormously for your honesty and for what you’ve done done for Myeloma UK. I’m certain your husband and kids hate myeloma almost as much as you but they’d rather you had that and a million other things rather than not having youat all so banish that thought out of your mind. I wish I still lived in Halesowen so we could meet up and just chat over a few, or quite possibly a lot, of drinks in a Clent pub somewhere and then go home feeling better even if it was temporary alcohol induced state. Stay strong because a lot of people need you!

    Like

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