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spooniemumoftwo · 4 years

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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.

#ME/CFS #MECFS #cfs/me #cfsme #myalgic encephalomyelitis #chronic fatigue syndrome #chronic illness #spoonies #spoonie #spooniemumoftwo

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