spooniemumoftwo

[spooniemumoftwo]

PTSD and ME

Living with ME is hard at the best of times, let alone in times when there is trauma, intense stress and just general 'naffness' (yes that's a new word, and yes, as a speech and language therapist, I'm going to use it!) I'm not even sure how to start to address what we've been through or how to summarise the effect its all had on my ME. Where do I start?!

18 months ago, I was involved in a significant RTA along with my two littles, on a routine morning school run. Apparently, a head on collision with a truck is not the best idea, who knew!?🤦🏻‍♀️ Its not something I ever imagined happening to us, and not something I ever want anyone to go through. It's been horrific, and recovery has taken so so much more out of me than I'd ever considered.

To start with, there was the accident itself and roadside recovery, police, investigations and legal stuff to sort. Maybe it's just me, but I'd never considered what happened after a significant RTA. So many different things to consider including contacting the police, medical assistance, roadside recovery, motor insurance...the list goes on. A complete minefield. Luckily, there were people who sorted most of that for me initially.

There's the physical injuries we all suffered. Again, not something I'd ever considered really as 'something like that won't happen to us'. Naiive I now know. The littles sustained head injuries, significant bruising and some thankfully minor cuts and scrapes. By all accounts they were thankfully incredibly lucky. Sadly, I sustained front and back head injury, several upper and lower limb injuries, spinal injuries, internal injuries, and a completely crushed ankle, as well as some very colourful bruising. One surgery later, and I'm now the 'proud' owner of a bionic ankle being held together with more metal than bone, and am awaiting potentially three more surgeries on the same ankle in the near future. I'm left with continuous significant pain daily, very limited mobility and a physical disability on top of the invisible disability I already had. Great!

What I really hadn't considered was the psychological impact all of this would have on me and my littles. Reliving the narrative of what had happened to us at medical appointment after medical appointment, nightmares, flashbacks, grief, anger and all other emotions aside, knowing we had to continue and effectively, 'move on' from the ordeal has been a huge journey, and we aren't there yet. In some ways, I'm hugely grateful for the dash cam footage from a vehicle behind us, which answered some very pertinent questions for me, and yet, in other ways, seeing the accident unfold from an outside perspective has been utterly terrifying and traumatising in equal measure.

Listening to my littles, the people it is my job to protect against anything, ask about the accident, talk about different things they remember, and ask even the people most familiar to them whether they are a good driver before getting in their cars has been heartbreaking. Being told by my littles that they felt I had let them down because I couldn't get them out of the car has nearly broken me so many times. We've been through weeks of therapy with the littles, and yet even now, we have to anticipate and expect the anxieties and questions that surface daily following the trauma they have experienced.

Not only have my littles struggled since the accident itself, but I have suffered significant psychological trauma since then as well. Flashbacks whenever my eyes closed, anxiety about getting in a car, and anxiety about being near a road. Avoidance of situations, reluctance to leave the house, low mood, sensitivities to certain noises or sights. The extreme range of emotions I still experience on a daily basis, from fear, anxiety and grief, to anger and frustration as well as a sense of 'it's not fair and 'why me?' have been exhausting to manage, and the list goes on. This has all been entirely exhausting and debilitating whilst exaccerbating my ME CFS symptoms.

Dealing with my apparently 'significant' Post Traumatic Stress Disorder (PTSD) following the accident in October 2021 has taken everything I've had. I've been through various psychological assessments, weekly counselling, Reiki therapy, Hypnosis, EMDR (Eye Movement Desensitisation and Reprocessing) therapy to process what has happened, and emotion focussed Cognitive Behavioural Therapy to name a few interventions. Each of these, whilst targeting a specific aspect of my PTSD, have been exhausting and significantly fatigue inducing in their own way. Whether it was the continued processing of very raw information after sessions with a professional, or the strategies I needed to implement between sessions; keeping track of the various appointments I had each week, or allowing myself the time to recover and recuperate whilst I was signed off work, has all taken its toll on my body.

One of the interventions I have engaged with, was role playing and writing a letter to the other driver to explain what I feel and the impact of the accident itself. This has brought up several very intense emotions during these tasks, and has often left me very fatigued for a number of days each time we have explored this. The heightened emotions I experience and the anxiety these tasks cause me, have needed to be managed very carefully. I've had to allow a number of days after each session of therapy to continue processing what has been discussed, to continue reflecting on that session, and to recover from the post exertional malaise that is so typical of ME CFS, yet another symptom I have that has been exacerbated by PTSD.

PTSD is cruel in any circumstance. PTSD symptoms differ from one person to another however the symptoms are often severe and persistent enough to have a significant impact on the person's day-to-day life. Add in a chronic illness such as ME CFS, where energy and emotional resilience are extremely limited, and there is another level of impact. Living with ME CFS daily for the last few years, I've been acutely aware of my need for rest, quiet time and space to recuperate and recharge my energy levels. With PTSD, its been much harder to do this and yet much more important. The added anxiety I've experienced when attempting daily activities such as travelling, being outside the comfort of my home, being away from my children and being independent, has caused increased fatigue, as well as exaccerbating other symptoms such as headaches, brain fog and memory issues. My motivation to leave the house and socialise has been reduced and my desire to communicate with others and to engage in activities I enjoy has also been reduced.

Throughout this whole experience, I've been hugely aware of my ME CFS symptoms and the increase in the severity of these. I've had to be very careful to implement self care strategies and to allow myself the time to rest and regulate my fatigue. I've been very lucky to have some incredible family and friends who have been with me every step of the way, facilitating self care when I've been unable to prioritise this for myself, sitting in hospital waiting rooms with me, driving me around the county, and being there for me to lean on for support when things have been tough. Seeing a familiar face in Accident and Emergency, and knowing there may be familiar faces at some my appointments have definitely helped me along. Having ME has, without a doubt, made managing and recovering from the accident more complex and drawn out so far, but the PTSD symptoms I've experienced have been more complex and draining as a result of the ME CFS.

We are a long way from 'recovered' still, and there is a long way for me to go to have my PTSD and ME CFS symptoms under control, but with the support of some fabulous family and friends, I have no doubt we will get there in time. I couldn't have got this far without the people closest to me, and am so grateful and thankful to each and every person who has been there for us all.

[spooniemumoftwo]

Life with a Dash of Accompaniment

Life with ME is unpredictable at times, and frustrating in equal measure. It has been a learning curve to the extreme so far, with twists and turns along the way. Some days are almost 'normal' based on my experience pre-ME, and other days are a completely new experience.

Since April 2020 when I had Covid-19, my level of daily fatigue has increased significantly, my ME CFS symptoms have increased in severity, and my energy levels have reduced in an almost constant reduction. More concerning for me though, is the apparent deterioration in my legs and my mobility.

For nearly a year now, I have found myself stumbling regularly, losing my footing, and experiencing what I can only describe as my legs 'giving way' or 'going numb'. With two young children, this has proved difficult on many levels. Living through a global pandemic, and the only reason for leaving the house being to go for a walk, means my decreasing mobility has limited this option for us significantly.

In recent months, I have seen a physiotherapist, albeit via Zoom, an occupational therapist, and a therapies assistant who advised that the use of crutches, as well as bathroom rails and an extra stair rail to support me was something I needed to consider! Where do I start to comprehend that at 33 I needed aids at home? My first thought of "I'm not old, I don't need grab rails" was followed closely by "how on earth can I be an active Mum on crutches?" Obviously, if they would help me to remain steady and increase more mobility, it was a no brainer decision, but I didn't want to rely on aids of any description. I reluctantly agreed to all of the recommendations, and am now the slightly reluctant owner of more grab rails than I've ever seen in a 'younger' person's house, a 'perching stool' for the kitchen, and a pair of (recently 'glammed up' thanks to a lovely friend of mine) crutches.

Since receiving the crutches, I've learned to use them and live with the idea I need them. Accepting help (or even asking for it) has never been a strong point for me - my husband and close friends may even say I make excuses as to why I don't need the help, but its definitely something I'm learning. The frustration of having to take my crutches everywhere including work, and the much slower pace we take when I'm using them is something we are adapting to as a family. The 'novelty', for my children, of me being on crutches, appears to have lessened somewhat over the last months, though I suspect this links with the extra jobs they now have including carrying a basket for one of my 'short shops' in a supermarket! Apparently, my shops are never short!

I have found accepting I have a chronic illness and being open about this a challenge, and to me, the use of my crutches drew attention to that. Initially, I felt self-conscious of my crutches and felt people were staring at me, but in fact, they've opened up really useful conversations about my condition, and the conditions others may be living with also. Its been a learning curve, and we aren't done yet. I do see the obvious benefits of using them: I'm much more steady on my feet with them; they slow me down which doesn't necessarily have to be a bad thing in terms of managing my ME CFS; my energy levels are more managed when I'm using the crutches as I don't have to concentrate on staying upright. My children named them so that they could accept them more easily, so we now have Connie and Clara as 'Mummy's aids' which apparently helped them appear less scary and daunting for my children. I still often feel significant frustration that I have to have support, and that I'm not currently the person I was a few years ago, but I am starting to accept and use the help I have available to me. Some would say I'm stubborn... well, maybe just a little ;) but I've ways liked my independence and doing things at my pace, often too quickly.

I'm learning that its not a sign of weakness to ask or accept help thats offered and needed.

#cfsawareness #cfs #chronicfatiguesyndrome #chronicfatigue #chronicillness #MECFS #CFSME #pwme #ME #MyalgicEncephalomyelitis #spoonie #spoonielife #spooniemumoftwo

[spooniemumoftwo]

Parenting through Lockdown and Covid-19 with ME CFS

Parenting is the best, and most rewarding thing I've ever done, and yet at times, its equally the hardest job in the world. Adding ME CFS into the mix complicates things further at times, but we work through it, and become stronger as a family unit. However, also adding a global pandemic into the mix...now, that is a different story!

What a year 2020 has been!

The last nearly twelve months have been full of confusion, anxiety and a different everyday living for most people. Imagine all that change, emotional and physical stress, and required resilience on top of a pre-existing chronic illness. 

Up until nine months ago, things were fairly normal, or as normal as they have been since my ME CFS diagnosis. My ME symptoms were being managed and I was maintaining a slower but relatively steady pace of life. As many others, I was worried about the possibility of catching the Covid-19 virus, and the potential impact of that on myself, my family and obviously my current health. There was the added concern that many others shared, about lockdown, working from home and home schooling! What a minefield!

One of my children has ADHD and anxiety, and had already demonstrated that she was worried about what was happening. The day schools closed was rough! We all cried that day, a lot! Whilst dealing with my own anxieties about the short term plans, myself and my husband found ourselves managing our children’s anxieties as well. Trying to reassure them that they WOULD be going back to school, that working from home COULD be fun, and that things WOULD go back to normal at some point, whilst not knowing or believing when, or even if, this would all happen. 

We started our new routine on the Monday. Home schooling with an attempt at a timetable to meet everyone’s needs, and working from home for 30 hours a week around home schooling. I’m not sure there were enough hours in the day or the week but we managed it, just! The main focus had to be helping our children regulate their emotions; allowing them time to be confused, time to be sad, and time to grieve for their ‘normal’ that had been turned upside down. In my role as Mum, I unintentionally neglected to consider and allow time for me to regulate my own emotions.

Then, at the start of April, I had a positive Covid test!

I was extremely lucky; I had extremely mild symptoms and remained reasonably well other than severe flu-like symptoms. As I know many others are experiencing, the after effects however, have been long lasting to say the least.

Since I tested positive for Covid, my energy levels have reduced significantly. There have been days when I simply do not have the energy to sit up for long at all. I've worked in bed, fully propped up by cushions; I've slept in the day and worked in the evenings when I've felt better, and there have been days where I have been able to work at my desk at home.

I've also found my mobility has decreased since I had Covid, and that I now stumble and lose my footing frequently. My daughter celebrated her birthday in the summer, and like most other children who had birthdays during the lockdowns, was insistent that she wanted to see her friends. To comply with the current guidelines and restrictions at the time, and in order to give her a brief 'escape' from the stress of lockdown restrictions, we arranged a walk in a local forest and arranged for a small number of her friends to be there also with their families so she could say 'hello' from a distance. During this walk, a mere 1 mile at most, I stumbled a significant number of times, and my husband noticed. He was visibly spooked and didn't leave my side for the remainder of the walk. I think this was the point where he became aware of the additional difficulties I was experiencing. My husband approaches life in a very matter of fact and optimistic manner, and often lives by a 'worry about things when they happen' mentality, however, having witnessed my apparent difficulties, his understanding of my ME CFS changed that day! From then on, we have worked together to monitor my difficulties, and to seek support for my ongoing concerning mobility.

During this year, our children have needed variety as well as things to look forward to, more so during lockdowns and times when there have been restrictions on who we could see. Not seeing our family has been a huge disappointment for us, as I'm sure it has for many, and we've tried to come up with new ways to facilitate this contact. Walks with a scarf to maintain 2 metre distances, zoom calls for bingo games and Uno, drive by's to briefly see people in the flesh whilst delivering something, and sending letters and cards. It's been hard! Watching my children struggle with these restrictions has been heart -wrenching. We've had to be resourceful! There have been days when the last thing I've felt able to do is be resourceful or creative; there have been days when I've had to put plans in place days previously, and there have been days where I've had to cancel plans made just to prioritise some rest and recuperation for myself.

My priority throughout this last year, as always, has been my children, and we've made so many lovely memories we will treasure forever. We have been so lucky to have time together that we wouldn't have had if schools hadn't closed. Despite the many positives, it has been the hardest thing I've ever done, and it has been so hard knowing that some days, I just couldn't do the things I felt I needed to do to make them happy.

When reflecting on this last year, a global pandemic has taught me many things:

That my children don't need to do exciting things to be happy, they need time with their family.

That being kind to myself and allowing myself time to rest is essential to allow me to be the Mum I want to be

That my children need rest also, and that we don't have to be out and about at all times

That family and friends are everything. The support we've had from family and friends continues to be the most valuable thing ever. Just to know someone is there for us and cares is huge.

That fresh air with my husband and my children is a therapy in it's own place. Being able to leave the house is a luxury we take for granted and often don't make use of enough, until that freedom is taken away. Two weeks isolation was hard...the same four walls all day every day.

I am a hugger - I always knew I was a tactile person, but it's only since that freedom has been temporarily (I hope!) taken away that I realise how important a hug is for me. Giving hugs is one thing, and I love that I can embrace my children and my husband when they need or want it, as well as when I want or need a hug. However, there are times when I need to be hugged, to be told things are okay and to be reassured.

Parenting through a pandemic was never something I envisaged, however it was something we've had to adapt to quickly. I think everyone, not just parents, have felt out of their depths at times during the last year, and yet, here we are at the start of 2021, a new year, ready to embrace what this year has in store.

[spooniemumoftwo]

People Therapy

We naturally find ourselves drawn to people with certain personalities. People say opposites attract, and I do think that's true ... my husband and I are opposites in so many ways, but in others we match completely. I am very lucky to be surrounded by an amazing family and some of the most supportive and best friends ever, and wouldn't be without any of them.

Family is Everything

My sister and I grew up watching our Mum live life daily with ME, and witnessed first hand, through a child’s eyes, the impact this incredibly debilitating illness has on the person suffering with it, as well as on their family and friends. We sat with our Mum as she took time off work, we experienced her own frustrations when she was not able to do things she wanted to do, and we also watched her fight and push through flares of her symptoms, putting us first, before her own needs. We witnessed, and now understand more, our Dad's emotions regarding this illness. The frustration, and sadness; the hope that things would improve, and his determination to support his wife and us, his children. I thought I understood to some extent, what Mum was telling us about how she felt, but I didn’t. It’s only now, whilst experiencing the same symptoms and annoyances myself, that I can fully identify with how my Mum has felt for over thirty years. I have come to realise that ME CFS is something you can’t fully understand or describe to someone unless you have the experience of this debilitating illness yourself.

My mum has been unwell with this horrible invisible illness since I was a very small child, and yet my sister and I were always her priority. We knew that, and yet, it still wasn't possible for us not to notice what was happening. We were there when Mum had to take time off work, we watched her carry out jobs and errands despite not feeling well. We were there when she felt better, and we were there through the harder days she experienced.

My Mum and Dad have supported me in a way only a parent can. They've been there through hard times, to listen, advise and support, and through the good times too. They've helped with my children when I've needed support, and they've shown me strategies to use myself on this journey they've travelled before me. I cannot express how grateful I am for their endless love and support.

My sister has been a rock. My confidant, and my friend. She's often been the first person to know when things are hard, and most likely when things are good too. She has been there with me through thick and thin. As the saying goes, my sister and I are definitely 'Sisters by chance, friends by choice!'

For better, for worse

I've been with my husband for 15 years, married for 10. I'm not sure which one of us deserves the medal more. We have two beautiful children, who keep us busy daily. Life isn't always easy or straight forward, but we are happy!

My husband is journeying along the learning curve of ME CFS with me and I think we are reaching some mutual understanding of what's going on. I have very fond memories of a teacher who often referred (and still refers) to our learning of music in choir as a vertical learning curve, and our ME CFS journey so far definitely feels like that ... no curve, just straight up! We work together as a team to implement strategies and consider changes we could employ to make things easier for us both. His thinking has changed somewhat, as has mine, and I'm forever grateful, despite the usual marital frustrations, for his understanding and ongoing support. He didn't sign up for this when he proposed or said 'I do'!

Ten years ago, our wedding vows contained the traditional 'in sickness and in health, for better, for worse' promises to each other. We didn't make our vows naively of course, but I'm not sure either of us allowed ourselves to envisage chronic illness in our future together. Despite my awareness of my Mum's ongoing ME CFS, I'm certain that my diagnosis of the same condition was a surprise to us both.

Glitter and Dirt

Our two children are a blessing. We have a 7 year old daughter and an almost 5 year old son. Glitter and Dirt, chalk and cheese. They keep us busy beyond belief most days, but their empathy and individual personalities amaze us every day!

We've grown two little mini me's. How crazy is that!

Our son was just 18 months old when I was first unwell and our oldest was three and a half. Life was pretty full on. But, with help from family and friends, and a great deal of stubbornness on my part, we pushed on. I wasn't able to let go and put me first ... I had two little people in tow!

Like my Mum, all those years ago, I know that our little people are, and always will be my priority. The days we've had picnics in bed (sorry Mum, I know you'll hate that!), and story time all day; the days we've watched too many films, and the days we've managed long walks in the sunny countryside, we've made memories and still had fun. These little people keep me going! They exhaust me, I'm not going to lie, but their enthusiasm for life and fun, and their contagious laughter is unending! Five o'clock in the morning may not be the best time for them to showcase their enthusiasm for life, but that's a work in progress. It is extremely hard some days to be a mum and manage my ME CFS, but I can't imagine things being any other way. My children are my world ... I'd do anything for them.

The language of friendship

I am surrounded by a number of really valuable and special friends. People who understand me and what's going on; people who know me better than I know myself, and people who will willingly tell me what I need to hear rather than what I want to hear, to help me see sense and make sensible decisions.

Without my friends, some of whom have physically escorted me to medical appointments to ensure I give all the facts, and to make sure I don't say things are ‘okay’ when they aren't, things could be very different. My husband often persuades me to slow down, with a mere suggestion that if I don't listen, he will message a particular friend who has no issues with telling me off as a last resort, and, sometimes it takes that threat to help me see sense. I don't give in, ever, and my friends who know me well, will know that my stubbornness is a huge wall for me, as well as being a huge frustration for those who care about me and want to help.

Friends really are as important as family. My friends and family are my rock, each and every one of them.

A common difference

It always amazes me when I speak to people about my ME CFS and they understand. It's a very mixed feeling; relief that someone understands and can empathise, yet concern and a degree of sadness that they do understand. Through talking about my journey so far, with friends and family, I've learned that a number of my friends and extended family members also have diagnoses similar to mine. We share that unknown, that answer, and that common difference.

I have spoken with my Mum on numerous occasions about her experiences of ME CFS in comparison with my own experiences so far. It has been incredibly powerful for me to speak to people who have been or are going through the same learning and realisation as me, some of whom are in a similar time of their lives as me, others who are at a very different stage in both their lives and their journey with ME CFS. Sharing our experiences, talking about how we feel, and writing our thoughts and feelings down have been hugely therapeutic.

It's a blessing some days, to not have to go into detail, or equally to feel the need to respond neutrally with 'okay thanks' when someone asks 'how are you?' To have that shared understanding when the unspoken words are interpreted and recognised, without saying a word, not only saves valuable energy in an interaction, but it also reinforces the value of intuition and a shared experience that may be so hugely different, yet so similar to mine. Everyone's journey is different, yet there will be some aspects that are very similar.

It's not ‘what’, but ‘who’ that is important

My family and friends have been phenomenal throughout all of this, with offers of help with my children, offers of company or just a natter when things have felt tough, and a hug. I never realised before the coronavirus crisis, quite how tactile I was as a person. I've always been a 'hugger' but I never acknowledged quite how much that hug was for me as much as the person I was hugging. Just a simple embrace from family or a friend can make things feel okay some days, and it's something I've really missed over the last few months.

I saw a quote recently, source unknown, which really resonated with me. 'There are friends, there is family, and then there are friends that become family.' People really are therapy, and my family and friends have carried me through the last few years. Knowing I'm not alone; that we as a family are not alone on this journey is a massive blessing. As much as I would never wish ME CFS on anyone, knowing that people understand and care makes things so much easier.

[spooniemumoftwo]

Music as a Therapy

Music is a huge part of me.

In recent years, my focus on music has deepened and my enjoyment of different types of music has increased dramatically. I have found opportunities to step out of my comfort zone and music has given me the confidence to do so. This is not without limitations though...my ME CFS continues to try to determine what I can and cannot do.

I remember holding books before I could read, walking around the house singing from them. I learned to play the keyboard from a very early age, and played duets with my sister at local nursing homes and for family. I'm sure that persuading me to practise was never an easy feat, and repeated reminders that it was obvious I was recording my rehearsal one time and just replaying it didn't phase me.

At 12 years old, I attempted to learn to play the acoustic guitar. This wasn't quite so successful, though it may have been because the guitar itself was as big as me, and carrying it the 45 minute walk to school and back every week, come rain or shine, was not an appeal.

At 14, I started to learn to play the clarinet and was bought my own clarinet by my grandfather. This I took to much more quickly. It was much smaller than my guitar for a start, and enabled me to join the school Big Band and Wind Band as well. Sharing music with others who enjoyed it as much as me, I was in my element! Practise was still a chore, but it was easier to endure.

Throughout school, I was involved in school choirs, singing my way through life. Singing in the shower, in the car, in my room. I was often told as a younger child to stop humming in class or when I was concentrating.

I studied Music for GCSE and loved it! Music gave me a confidence I'd never had, and enabled me to be with like minded people. Some of my best memories from school involve my music group and the school choir and choral society.

I'm incredibly lucky to be part of a lovely choral society still as an adult, with some of the same friends, and the same incredible Musical Director we had in school all those years ago. No matter how I'm feeling, whether its been a rough day for my ME CFS, or a day where things have gone well, my hour at choir always makes things better. Music is good for my soul. Sharing a love of music with great friends, some of whom I've known since I was a pre-teen, is the best therapy! We laugh, we sing and we continue to grow together.

My family would say I'm always singing something, trying to add an alto line into my favourite songs, much to the irritation of my husband who hates listening to the same song more than once. Music is my go to when I need a boost, and I love that my children are starting to follow in my footsteps.

When I was first unwell, back in 2017, and again in 2018, one of the really significant irritations for me was that I couldn't sit at my piano and play the music I'd been playing until very recently. I couldn't sit up for long, I couldn't concentrate and I certainly couldn't sing, with limited breath support and increasing fatigue. I would put my clarinet together and play part of a song and I would be exhausted. My clarinet would be put back in the case and left there for days, sometimes weeks before another attempt to play. I would set myself up at the piano, and sit there for a few moments playing something familiar before I had to move and sit down in a comfy chair, or even lie down. I couldn't maintain breath support for long enough to sing a phrase in a song. And I knew it. I could tell I was missing something ... my music!

Over lockdown during the current Coronavirus pandemic, I have regularly sought music as a break from the stresses of lockdown life. I've been involved in some virtual choir recordings, I've spent hours singing into my headphones and many more hours immersing myself in my favourite songs. I am studying a Song Therapy course from home, although this is at a much much slower pace than I originally anticipated 18 months ago. I have used music and singing as a therapy intervention at work and have seen the benefits of music to all sorts of people, and reading into the benefits of music for my studies further fuels my belief that music really is a therapy! It certainly is for me.

There are days when I can't physically sing my favourite songs, or when my enthusiasm to listen to music wanes, but there are days when music lifts me; when a song on the radio can strike a chord and really sit with me. My dream is that one day, I will be able to be able to perform and share music with anyone who would listen, but for now, my therapy is enjoying the music of others.

Music, for me, is a passion, a therapy and a release. Music can be whatever you want it to be.

[spooniemumoftwo]

This is me!

Have you ever heard of ME CFS? Do you know anyone with ME CFS? Have you ever heard the phrase ‘counting spoons’? 

Having read a huge number of blog posts on ME CFS over the past few years, this is my own answer to some of these questions. Please bear with me – this has been a work in progress for a while now.

Me – Could I have M.E?

As a teenager, and even recently, I never imagined that I would find myself writing about my experiences of life with a chronic illness, and yet, here I am. I am 33 years of age, a wife and mother to two beautiful children, and I have a diagnosis of Myalgic Encephalomyelitis (ME CFS). 

Over the past few years, I have come to realise that ME CFS is something you can’t fully understand or describe to someone unless you have the experience of this debilitating illness yourself.

Where do I start?

Over the last three years, there have been ups and downs; life has been interesting, and the learning curve I have found myself travelling on has been almost vertical at times. I am not there yet.

Back in Summer 2017, I woke one morning to find I had no voice at all. This was unusual for me but not the first time it had happened. Things had been busy and a little fraught with two small children, whilst I was also working almost full time, so I thought nothing of it. I now suspect, as do the consultants I have spoken to since, that this was my body’s way of fighting the Chicken Pox virus, as my youngest came down with Chicken Pox two weeks after I first lost my voice. A week without my voice went by, writing notes for my husband to ignore as he felt appropriate, and giving my children 'the look' instead of telling them what I was thinking, and I spoke to my GP who diagnosed me with Acute Viral Laryngitis, and prescribed me three weeks off work and TOTAL voice rest, much to my husband’s delight and amusement. Three weeks later I returned to work, having slept all day for at least two of the three weeks I’d had off work. I was shattered. I never imagined returning to work after only three weeks off would be that tiring, but I did it. I underwent a further six months of speech and language therapy sessions (ironic considering my own role as a speech and language therapist) to help me work on my returning voice and my worryingly limited breath support, something I had only noticed since losing my voice.

Nearly twelve months on, in April 2018, I found myself signed off work again, this time with suspected Labyrinthitis. I experienced dizziness on and off, and again, I slept for most of the time I was off work. I was finding it hard to put sentences together, and felt like my whole body was being held down by a weighted blanket. Three weeks off work again and then I returned to work and my usual routine, with a promise to myself to take things easier this time. The dizziness continued but not enough for me to be off work, so a referral to a cardiologist followed to check it was nothing cardiology related. A 24 hour ECG followed by a 32 day ECG test demonstrated nothing significant, and therefore this was put down as yet another symptom I had no answers or reasons for.

By August 2018, I realised I had spent the majority of the summer term in schools telling myself ‘if I can make it to the summer holidays, I will be okay’ and yet, there I was, at the start of the summer holidays, and I hadn’t allowed myself to slow down at all. I have always, even as a pre-teen and a teenager, worked towards the school holidays, and continue to do so as an adult. I recall, as a teenager, regularly sleeping for the first one or two days of a school holiday, or suffering with a cold and feeling generally unwell for the first few days after allowing myself to slow down or to relax, and yet, here I was, putting the same pressure on myself as I always had. This time, however, I did not allow myself to rest. I knew what would happen if I did.

August 2018 saw me celebrating my own mini achievements regarding my engagement in a Couch to 5K running programme. I have never been sporty, and running was my least favourite exercise. However, for some reason, in 2018, I decided I was going to make myself enjoy running! I soon found running gave me time to myself with my thoughts, (unless accompanied by one of my chatty little people who often wanted to go with Mummy on a run) and running was my 'me time'. I managed to complete my first ever continuous 20 minute run in the middle of August, a very small achievement for many, however for me this was huge! I was becoming a runner, or so I thought. I only ran once more that month, and haven't managed a run since…

The summer holidays passed by and at the end of August, we celebrated my eldest child’s 5th birthday. I will never forget the call we received first thing that morning, to tell us that my grandfather had sadly passed away in the early hours of the morning.  On my daughter’s birthday. I held myself together and threw all of my energy into celebrating my daughter’s special day. I was heart broken, and yet, as always, my children came first, and always will. The day after, we hosted a party for our daughter as we had planned. I could think of any number of places I would rather be, than hosting a children’s party, but for my children, ensuring they were happy, and maintaining the usual normality, especially things they had looked forward to, was essential. After we had cleared up, and the children had been put to bed, revelling in the excitement of the day, I took myself off to the gym, and pushed myself to run as far as I could.  I managed a 35 minute continuous run, telling myself “it was just for you, Grandad!'’ I was exhausted, mentally and physically. Running had allowed me time to myself to clear my head and my thoughts on many occasions prior to this, however that night, I was broken. I could do no more. My head hurt, my legs hurt, even my breathing was draining me.  I was done.

Two days later, I lost my voice again, and this time, I listened. I listened to what my body was saying, and started to put a few of the pieces together in my story. I have always pushed myself as far as I could push, but I was spent. Emotionally, and physically, I had nothing left. I spoke to my GP in view of my previous significant voice loss, and was instantly told to take some time off work to recharge and rest my voice. I reluctantly agreed to take a week off to recharge before going back to work.

A week later, at the start of September, I saw my GP, accompanied by a very good friend, to make sure I gave the facts and was honest about what was going on. We talked about everything. With the support of my friend, I listed all of the symptoms I had been experiencing, and yet not acknowledged, things I was finding difficult - sensitivities to light and noise, complete physical exhaustion, difficulties concentrating, poor spatial awareness - there can only be so many times a person can walk into the same photocopier in the same position on the same day. (My record was five times one day.) I described the difficulty I had in expressing myself and communicating with others at times, and my concerns about the slightly narcoleptic speed at which I could fall asleep and still feel totally unrested when I woke up, no matter how long I slept for. I raised my concerns and questioned whether I could possibly have some signs of ME CFS, however my GP said that at this stage, she did not feel I had ME, and that there were a huge number of reasons I was feeling as I was at that time. She was right about that, there had been a lot going on. I reluctantly left the doctor’s surgery with a certificate signing me off work for four weeks, and I was under strict instruction to rest completely, and not to return to work within the next four week period. I have never taken time off work willingly, other than for the usual expected absences due to the usual common illnesses, and therefore this went entirely against my work ethic. But this time, I had to - I was spent. I had no idea what was wrong with me, and how long it would last.  I was worried and totally exhausted.

A month later, I returned to my GP to try and persuade her I was ready to return to work. We talked about how the last month had gone, how I was feeling, and what my thoughts about work were. I tried to list the positives to show I was feeling better but what were they? I was sleeping all of the time other than when I had to be awake to do a school run, or to look after my children, which I had been doing mainly from the sofa whilst they amused themselves in my sight. I was finding it difficult to carry out simple and regular tasks such as showering, which left me incapacitated and lay on my bed for some time before I could continue with the day. Cooking and preparing meals were a challenge, as this involved me being upright for longer than was comfortable. Having a conversation on the telephone was exhausting, and yet talking to someone in person was strangely slightly easier. I was often disorientated and a slight change in plans left me confused. On really bad days, I frequently could not have a conversation without losing what I was saying, and found it difficult to think of the words I wanted to say. My mind went blank. None of this made sense. I was 31 years old and generally healthy. What was wrong with me? I sounded like I was making this up and began to doubt myself. My GP informed me that she had been thinking about me, and had spoken to a colleague of hers for some advice. She advised that after some thought, she felt a referral to a specialist in Chronic Fatigue may be worthwhile, as it was possible that some of my symptoms could be signs of ME CFS. That made me anxious. I had suspected that this may be the case for me for a while, but to hear a clinical professional confirm my suspicions and want to investigate further sent chills right through me. How and why was this happening? We agreed that I would be referred to the consultant specialist, and I left the appointment with another four weeks off work, and a hope that I would return to work after another month, IF my energy levels had increased sufficiently.

Another month later, I returned to my GP, and despite me still experiencing significant fatigue, I was desperate to return to work and some normality. My GP reluctantly agreed to a phased return to work which would be monitored closely by her. I returned to work, initially for two half days a week, with a view to being back to my normal thirty hours a week by the end of December. I was still exhausted. Each day was a huge challenge, but it felt so good to be back at work! I tried to take things as easy as possible, as I was mindful that I needed to read the signs and listen to what my body was saying. I didn't feel like the person I was before, and yet just being 'me' again, in my usual workplace was a tonic.

In February 2019, I saw a consultant specialist in chronic fatigue, accompanied by another amazing friend. We talked through everything, literally everything! For a whole two hours, we discussed things I was able to do and things I couldn't do. Things I enjoyed and things I didn't. We talked in detail about my childhood, family history and medical history. I was referred for a sleep study to rule out sleep apnoea, and was advised that if the results of this study were unremarkable, then yes, I would be diagnosed with ME CFS. Otherwise, the diagnosis would be sleep apnoea. I felt sick, but with support from my friend, my husband and my family, we talked things through. But there were still no answers.

I am so lucky to have an amazing family and so many loyal and caring friends around me who know me better than I know myself at times. I can't express my thanks to each and every single person who supports us. Those who are there for me, to listen, advise and give the best hugs, and those fabulous friends who just know what to say and do when its needed. Those who try to understand what's going on, and those who know me best! My amazing family and friends regulate me and aren't afraid to tell me what I need to hear, despite this often being the harsh reality that I can't see (or don't want to!). I am often told to rest and that I need to put myself first, but that's not how I work, or it’s not how I've worked in the past anyway. I know I unintentionally frustrate the people I am closest to with my stubbornness and drive, and my reluctance to 'give in or give up', and I am so grateful for the support of so many people.  

I finally received my appointment for my sleep study at home at the end of May 2019. I was shown how to fit the oxygen tubes, oxygen monitor and all the gubbins that go with it and was sent on my way. Honestly, the sleep study was not the best night of sleep I've ever had...it turns out I'm a little more claustrophobic than I thought I was. But, by the following morning, the test was done and the equipment was safely returned to the hospital. My pending diagnosis was in their hands now. I received a letter at the start of July 2019, to say that I didn't have sleep apnoea, so there it was. A diagnosis of ME CFS.  Mixed emotions flooded me...relief that I wasn't going to have to wear a mask to sleep, and yet dread at reading the words I knew would be in my next letter from the consultant! On 25th July 2019, my letter arrived in the post. It simply said 'I can confirm that this patient has ME CFS. I will refer her to the local ME service for support'.  I was numb. 

So many questions!

How will this affect my children? What will happen next? Where do I stand with work? Will I need help? What does the future hold? All these questions filled my head. Many questions remain unanswered even twelve months on from receiving this letter. With no cure or successful treatment for this, I felt a mixture of panic, sadness and dread and telling my husband the results we didn't want to hear was hard. How would I be able to be the wife and mother I so wanted to be with this chronic illness? My children are still so young. My husband didn't sign up for this! This all felt so unfair!

Since my diagnosis, I've been supported by the local ME CFS service and their advice has been invaluable. The learning we have done as a family about the illness, the symptoms themselves and life as we know it, has been intense. I am able to recognise some of my triggers and my responses, though these constantly change and have increased in severity lately, but my husband, family and close friends will agree that I'm still pretty rubbish at really listening. I cannot seem to take it all in.  I am on overload.  I am a giver naturally...I don't come first in my head. I think of everyone else before myself - my children, my family and my friends. That is just me.  But it wears me out.  

My children

When I was diagnosed with ME CFS, my first thought was not for me, but for my children. This is not how I imagined parenting my own children. I felt a huge sadness that this would mean they had to grow up more quickly, to understand things a young child shouldn't have to, and that we may not be able to do all the lovely things we did when I was a child. I made a promise there and then...ME CFS wasn’t going to stop me doing things with our children. Our promise to our children even then, was that they would come first and that my husband and I would get through this together. This is not my children’s problem, it is mine.

My husband and I agreed very early on, not to give our children the details but just to explain, when needed, that Mummy just needed to rest. This worked for a while and kept questions at bay. I recall one lunchtime when I had prepared a 'picky lunch' at the request of our three-year-old son. I had laid on the sofa while they ate and watched a film. My daughter, aged around five at the time, touched my arm gently and gave me a crisp she had found, saying “Mummy, please have this heart-shaped crisp. It will give you more energy”. Wow!! I'm not sure how I held the tears in...I was completely taken aback! Without telling her anything other than that Mummy was sometimes a bit tired, this little sensitive soul had put two and two together and made her own conclusions. I knew we had to tell her a bit more now, if anything, to make sure she wasn't making her own ‘wrong’ deductions. 

We have recently been introduced to a fabulous book which has been integral in our challenge of giving our children the facts they need whilst not giving them too much. This book, 'Supercharged Superhero' by Gemma Everson has been written to help children understand why a parent with ME may not be able to play all the time, and that they can have fun in different ways with their family. We love this book, and my children often ask if we can look at it again. We've spent many hours reading through the story, chatting about the pictures and thinking of our own ways to have fun which I can join in with too. Find out more about ‘Supercharged Superhero’ and get your own copy of this gorgeous book.

The Journey so far – September 2020

My journey through diagnosis and learning to adapt so far has been uphill. There have been some huge changes I've had to make to my lifestyle, specifically our pace of life and my priorities. Having never been able to say 'no' to anyone or anything in my adult life, my major challenge is to start saying ‘No, no, no!’ Such a simple word, and yet I just can't do it! Others always come before me; my family and my friends, and yet I know I need to work on this. I know I unintentionally drive my husband and close friends to distraction...they know me better than I know myself often, and I am always being told to slow down, or to put me first, but I can't. Only when I have no option otherwise.

I spend my life falling asleep without planning to. I rarely see the end of a television programme or film. As a family, we often plan to go out on adventures in the mornings or early afternoon, as my more unpredictable time of day is usually mid afternoon to early evening. With careful planning, we do go out and make memories as a family of four, and we have lots of fun together. 

Everyday, I spend huge amounts of energy putting a brave face on to hide what I'm really feeling inside. I can’t do this anymore! I feel like most people only see me in a disguise, only my close friends and family know enough to understand what's really going on, and many of them can read me like a book. Conversely, I am constantly told I look really well, when in reality, I can barely stand up some days!  When things are really bad I can't easily hold a conversation, and I often focus all my energy on getting to the end of a day, an hour, a meeting or some other mini target I've set myself. I am wishing time away just to ‘get through’.  My illness is an invisible illness, and it is called that for a reason...it IS invisible!

On paper, my symptoms are fairly mild in contrast with others who have the same diagnosed condition. I am able go to work four days a week still, I am able to take my children to the park or on carefully planned day trips, I can still do some of the things I do for me, to allow me to be 'me', although these ‘things’ for me, are usually the ‘things’ I cut out if I need to slow down - leaving no time for Me!  

The Present and the Immediate Future   

In recent months I have seen a huge flare of my symptoms and have been much more debilitated than previously, but I am hoping this is just a blip in my journey. Working from home and home schooling two young children during the Covid 19 pandemic has not helped.  Life has been a bit mad for us all lately, hasn't it?! I can only imagine how people feel, who have much more significant symptoms, and I try to empathise with those whose symptoms are much more severe than mine. ME CFS is so varied and different for each and every person diagnosed with it!  

ME CFS is not well understood.  As it is ‘invisible’, others do not know I am suffering symptoms that often debilitate me. I cover it well by pretending I am ‘ok’ until I finally crash and burn at home. This is my reason for sharing my story, living with this condition, to promote awareness so that others may benefit from learning about how it affects a person and how people can make allowances. It is not going away!! Maybe I was ‘given’ this condition because I am naturally a strong person who is ‘driven’ to come through everything, no matter what. I do not know. I know that sometimes, I just can’t and I am worn out ‘pretending’. So I have chosen to share this and maybe I can make a difference to someone else. Acknowledging symptoms is just the start. Getting a diagnosis is paramount, and getting the right help is vital for any kind of future.

You've got this far, well done! Look out for how my story unfolds. Until then, we must stay positive!

XxXx

#chronicfatiguesyndrome #chronicfatigue #mecfs #me #myalgicenceohalomyelitis #cfsme

[spooniemumoftwo]

The Beginning

I'm 33 years old; a wife, and mum to two fabulous children. I was diagnosed with ME CFS in the summer of 2019 having been unwell for a few years. I've started this blog as a place for me to write down my own thoughts and feelings from time to time, as well as to be there for others. I've read so many blog posts since I first became unwell and have found each of them individually helpful in some way. Whether they were affirming what I'm feeling, encouraging me in some way, or just acknowledging that this invisible illness is real! If I can help just one person through this blog, I've succeeded.