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The Reality of Life as a Spoonie - The Family Patch

The Reality of Life as a Spoonie

If you’ve been reading this blog for any length of time, I’m sure you know by now that my health has never been great. And if you’ve followed me on instagram lately, you will likely have noticed a big “healing” theme to my posts. But the truth is, I am more sick that I have ever been in my life right now and it has been really hard for me to accept that life as a spoonie really sucks sometimes.

The Reality of Life as a Spoonie - The Family Patch

I first came across the term “spoonie” in my early twenties, around the time of my Endometriosis diagnosis. And it felt like such a relief to realise there was an explanation for all I was feeling. I had struggled to keep up with people for years, spent most of my University evenings staying in and getting an early night whilst my friends went clubbing, and would sleep for hours during the holidays to “recoup” from late nights and early mornings studying and finishing a multitude of assignments (language degrees tend to be pretty heavily weighted in the coursework department!)

Of course, you don’t get as many weeks’ holiday to rest once you move into the world of work, and adding in a commute meant that my mid-twenties taught me a lot about my limits as a Spoonie and that sometimes you just have to make sacrifices. By the time we started trying for a baby I thought I knew my limits and how to honour them. How wrong I was!

The past 5 years have been filled with events and experiences that have pushed me beyond my limits in a way I could never have imagined. Hyperemesis during pregnancy (with anaemia, Obstetric Cholestasis, and an unstable pelvis to boot) meant that I started my life as a parent physically beaten and emotionally exhausted. Sleep deprivation, which continued for years with our Little Man, who still at almost 5 years of age only sleeps around 9-10 hours a night and wakes regularly in the night too, affected my ability to rest and recover.

Returning to work, to help make ends meet and pay off our debt, meant that I had less time than ever before and suddenly had to split myself between work and home life. This became increasingly difficult when I moved into a homeworking role, one where my passion for the cause blinded me to the dangers of being “on the front line”, meeting people’s needs when those needs were intrinsically linked to my own personal trauma. And on top of all that, my husband was diagnosed with Small Fibre Neuropathy, meaning he lives in immense daily pain and, as he struggles to come to terms with his diagnosis, his emotional and mental health has taken a real beating.

So, as you can imagine, by the time we reached the end of 2014 I was completely and utterly spent. I remember crying as I walked the long route to nursery to collect Little Man, because I didn’t know how I was going to take another step. I remember being so terrified that I was losing my mind when I became obsessed with what was happening at work and I couldn’t eat or sleep as the anxiety made me so ill. And I remember praying for an answer, knowing that I had given it my all (and more) and I just could not go on any longer…

Of course, I was made redundant at the beginning of 2015, and things began to pick up. I felt well again, I had energy, I was sleeping and cooking and eating and enjoying life. Heck, when we finally moved back to my hometown I started two new jobs, working far more hours than I had initially contracted for, and spent almost every weekend busily attending conferences, visiting family, and having a great time. I thought that was it, that I’d survived the burnout of the past few years, and things were finally on the up!

Except, now I know better. That initial sense of relief that came with making positive changes in my life, was short-lived. No Spoonie can run themselves dry, borrowing not only days’ but weeks’, months’, even years’ worth of spoons without repaying it at some point. And yet still I tried to ignore it. The latter part of 2015 was overshadowed by three-day migraines, daily nausea, awful cramps, all of which I assumed were symptoms related to my Endometriosis. I ended the year with surgery and new meds that had helped previously and I thought 2016 would be okay. But it wasn’t.

I began this year experiencing extreme fatigue that seemed to last for days, especially after a week at work when my shifts all fell on consecutive days. I also began to suffer from joint pain again, as my left hip kept trying to “pop out” without warning, day after day. So I saw the doctor, thinking it was my Hypermobility. Except this time the word “autoimmune disorder” was mentioned and I was referred to a Rheumatologist. Since then I have had another GP, a consultant, and a physiotherapist all mention various autoimmune disorders to me, and I am awaiting screening for Lupus as various things in my blood report suggest it as a possibility. And I finally have to accept that after all I’ve been through, all my body has endured, this is perhaps inevitable – if you don’t respect the spoons you have, things are gonna get worse!

And I look back over the past few years and wonder why I was so determined to ignore that. It’s not that I didn’t know it, because I’ve always known it. My mum was diagnosed with ME when I was in my teens, so I have known about autoimmune disorders for most of my life. I also knew that there is often a crossover of these conditions, where someone like me with Endometriosis (for example) could have a higher risk of developing an autoimmune disorder. It’s one of the reasons why I finally decided I could never have another baby – my body did not recover as well as many of the other Hyperemesis mums seemed to, and I’d watched a dear friend go on to be diagnosed with Lupus following her own Hyperemesis pregnancy. I just didn’t want to risk that. No, I knew about the risk, I just chose to ignore it.

Perhaps that is unfair. The reality is that I had very little choice – my baby needed caring for, my husband needed support in coming to terms with his diagnosis, and the debt needed paying off. Whilst in hindsight I may have made different decisions (for instance, we paid off our debt much quicker with me in a part-time role than we did when I was working full-time!) I can’t go back and change it now. All I can do is learn from it and move forwards.

The reality of life as a spoonie is really clear to me right now. I am so sick that I do not have good days, not really. A good day to me is one in which I can get out of bed, eat without feeling too sick, play with my child a little bit, and maybe put a load of laundry in so that we have some clean clothes. On days like that I have to remind myself to limit what I do, that whilst my house is a mess and I’d love to take my son to the park and enjoy the sun, if I do so I will regret it tomorrow. Because my bad days are really bad. On a bad day I can barely move – I just do not have any energy – and I run a fever, feel dizzy and sick, and struggle to even concentrate on the smallest of tasks like reading a book or sending an email. And I want to avoid those bad days as much as I can.

I know there is no quick fix to this. I know that I ran on borrowed energy for far too long, and that I have to repay that debt with exactly the same amount of care and patience as we paid off our financial ones. But it is hard, so hard! There are days when I feel like a terrible mother, because all Little Man hears all day is, “I’m sorry, mummy feels too poorly to do that.” There are days when I feel like a terrible wife, because TJ is also struggling and I simply cannot do anything to help him out any more, I have to look after myself first. And there are days when I feel like the world’s worst friend, because I’ve not been in touch with anyone for weeks (not even on Facebook) and my mum has to call me to tell me a friend has announced her much wanted pregnancy so I don’t miss it entirely. But that’s the reality of life as a Spoonie, especially when you’ve run out of spoons.

I’m hopeful that as and when I embrace this life of a Spoonie, really accept that this is how things must be and that the sacrifices I make are for a better future, that things will get better. I know many people who have been where I am and have then gone on to manage their condition better over time. I know it is possible to come back from this, and that is what is keeping me going right now. But the only way to do that is to listen to my body, honour its desperate need for rest, and do whatever it takes to begin to heal. I mentioned to someone recently that I know if I am ever to heal, I need to make BIG change in my life. And that’s the reality of life as a Spoonie.

Tell me, if you’re a Spoonie, what does life as a Spoonie look like for you?

Daisies

Nurturing Ourselves – The Importance of Looking After Ourselves in Times of Stress

I wrote earlier this week about how TJ and I support each other through our various health issues, and it really started me thinking. Whilst we are good at keeping each other going, no matter what, we are terrible at nurturing ourselves (physically and mentally).

I have known this for a long time, at some level, but it was showed to me very clearly Thursday afternoon when I visited a dietician for the very first time. After around 10 years of IBS-type symptoms, I’ve gradually discovered some major triggers, however recently it has felt like it doesn’t matter what I eat, I still get sick regularly. I’ve asked for help figuring this all out before, but never been referred, so it felt like a huge relief to finally see someone.

In reality however, the appointment simply reflected things I have always known – my diet is very limited and lacking spectacularly in various ways, which is having a direct impact on my energy levels. But more importantly, my biggest factor is most definitely stress rather than any particular food group, and therefore getting that under control is the key to eating better.

Nurturing Ourselves Importance of Self Care During Times of Stress

The problem is, how do you reduce your stress when life is throwing stressful situation after stressful situation your way? These past few years have been a constant stream of one new concern after another, and when I look back I can clearly see how the deterioration of my health directly corresponds to increasing levels of stress in my life.

The stress has come from three sources: a difficult work environment; TJ’s deteriorating health; and the financial implications of balancing the first two. Whilst I have made major changes to my work, reducing stress significantly, the impact that my previous job had still plays on my mind. I still have a fair amount of healing to do from that – there is no quick-fix to help recover from burnout, especially when your recovery included the stress of relocation and starting two new jobs.

And though we can make changes to our working life, the health issues we both face and the difficulty balancing a tight budget remain a source of real worry. It feels like we sometimes live life on a knife-edge, constantly ready to spring into battle at the first sign of trouble, meaning that the stress is there even when it isn’t!

When I look at all we have to cope with, I realise that it is no wonder I find myself with a pounding head, churning stomach, or abdominal cramps more days than not. It is also unsurprising that this then means I do not feel like eating, which in turn impacts on my energy levels. After a day at work, on my feet all day, I will often struggle to make more than a bowl of porridge for tea, having barely eaten at work as well. But eating like this only adds to the problem.

My appointment with the dietician may not have given me any answers I didn’t already really know, deep down. But it did make me realise how very much I have been neglecting my own well-being. I have been so busy caring for (and worrying about) others, both through work and at home, that I have forgotten to care for myself in a massive way. And that needs to change.

Which leads me to today. Today I am looking at how I can nurture myself. I have filled my kitchen cupboards with a variety of foods that will help me increase my protein intake, the aspect of my diet that was massively missing. And I am researching quick and easy meals we can make, as well as beginning to take vitamins to give that extra boost.

But this goes beyond the food I eat. It needs to include finding ways to deal with the stress in my life. The reality is that the stress is going to be there, no matter what, so rather than hoping for it to disappear, I need to find ways to relax amid the chaos. I started this earlier in the year with chanting, but I need more than the odd bit here and there… I need a daily routine of making time for myself, and for family.

TJ is with me on this – we are looking at ways to get out in nature, reduce our time glued to our phones or Netflix, and getting some quiet time in our day-to-day lives to reflect and recuperate. And I’ve decided to write about it here, on the blog, as a way of both holding myself accountable to actually doing this (rather than having the idea and never really doing anything about it) and seeing the impact it has on our lives.

It feels like a good time to do this, as we reach the end of Summer and feel Autumn fast approaching. I’ve always felt like September was a month of new beginnings, perhaps due to all those years when the new school term began at this time. And Autumn itself feels perfect for some self-reflection and nurturing as we surround ourselves with home comforts and close friends ready for the Winter months to come.

It’s always been my favourite season, and with Little Man’s birthday and our Wedding Anniversary added to Halloween, Guy Fawkes and Christmas, it feels like a truly magical and celebratory time too. I want to be well enough to enjoy all of this, rather than simply surviving it like I did last year, and that means finally putting my health and well-being first.

So that’s where I am and I’m excited for this journey ahead. I do hope you enjoy coming along with me.