Recent struggles & regaining perspective 

 wheelchair

Last month I was struggling with a few things that all together were making me feel quite low. Luckily I’ve more or less come out the other side now, but it wasn’t a fun place to be. I’ve since realised that I’m probably not alone in this respect and just wanted to share how these events have impacted on me and to let others with chronic illnesses know that it’s OK for everything to get too much sometimes.

Yesterday marked a year since I set off to America to begin Lyme Disease treatment with the expectation of hopefully seeing some improvement. I honestly can’t believe how quickly that time has gone! A year on I’ve been looking back and reflecting on what has happened since then and making inevitable comparisons between how my health was pre America to how it is currently and there is quite a difference.

I am more poorly now that I was then and have an array of extra symptoms to deal with as a result of the very intensive treatment. Life has therefore become more limited and debilitating. Experiencing what feels like a constant steady decline is hard, especially when others with Lyme disease (or other illnesses) who I know through social media, seem to be making improvements. I am genuinely SO happy to see others getting results –  it makes my heart full and gives me hope. I am in no way resentful, but it has been making me feel a little left behind.

Time is ticking on. I have now been ill for almost four years (nine including the amount of time I’ve had chronic pain), and I am getting older. I am approaching 30 (well kind of – I’ll be 29 in February), and want to start doing the things I’ve missed out on in my twenties and looking forward to things I should be doing at this age. For example, lots of people I know are getting engaged and the wedding season has also just begun. I’m over the moon that two of my best friends are getting married next summer! Even though I know there’s no way I’d miss my besties’ weddings, no matter how sick I may be at that time (especially as I’m Maid of Honour at one – EEEEEE so excited) and I’ll push myself to take part in as much of those special days that I possibly can, I just want to be well enough to be able to relax and be a part of these incredible moments without being distracted by pain, fatigue, noise sensitivity etc.

These past couple of weeks I’ve been feeling a lot better mentally and I am feeling more like where I was before what was a rare low point for me. My own personal coping mechanism is to focus on today and live in the present rather than worrying about what might happen in the future. I also realise that making comparisons to how my health was at any given point is not helping the mindset I need to work towards my goal of getting better.  Yes, I am feeling more poorly but I need to keep reminding myself that, with all the knowledge we have gained about my illness and the expertise of the specialists we are working with (we have now started working with a Naturopath too),  I am so much closer than I was two years ago (when I was first diagnosed) to eventually getting better – and to getting stronger before these big celebrations. Even if I am as poorly as I am today, I will still make the best of it and do what I can and those days will still be so very magical!

It’s important to understand that reading about a few sufferers online who are seeing improvements does not mean that everyone except you is getting better and that you are being left behind. Lots of people don’t want to share the bad stuff or are just too poorly to post and many of those who do share their improvements (and it’s so lovely to see), often relapse and still really struggle day to day but may choose not to share those bad times. It’s easy to get a false impression from social media on just how many people are healing from chronic illness. It isn’t a reliable reflection of how well someone is – it’s a tiny, isolated snapshot of that persons day or week.

Life with chronic illness is tough – the fact that we make it through each day is something to be celebrated. Having a wobbley day/week or month doesn’t make you any less of a fighter; it’s ok to not be ok sometimes, especially considering what we deal with! 

 

7 Comments

  1. Donna October 16, 2017 / 11:54 am

    I can relate to so much of what you write here Sophia. I found 30 so hard because I felt like I had missed out on most of my 20s. Healing is so so hard. It’s challenging and is a rollercoaster ride of ups, downs and unexpected turns— sometimes for the better, sometimes for the worst.

    I try to tell myself that the things that aren’t working are taking me a step closer to the thing that will. And that the biggest lows lead to positive change. I hope that change is just around the corner for you. Your unwavering determination will get you there. Patient persistence will one day pay off 🤞Lots of love xx

  2. Victoria October 16, 2017 / 4:18 pm

    I so relate to this and thank you for sharing+being honest. It’s very similar to the IG post I posted yesterday about what I’ve been going through. Social media can be great but also detrimental because it is snap shots and most people don’t want to just share bad things all the time. But it’s also been great because I can connect with others who are going through what I am and talk to them offline. I’m always sending my love and i hope you see more improvements soon. I want to catch up on all the things I’ve missed out on in my 20’s too!

  3. Jade October 16, 2017 / 5:12 pm

    Hi Sophia

    Thank you for writing this post. You should be so proud of yourself that you have the strength and courage to write this. I’m in a very similar situation to you. I’m also comparing myself to how I was a year ago and realising I’m worse and have more symptoms to add to the ever growing list. I’m also seeing my friends have babies and have great careers. Something I thought I would do until ME/Lyme struck me down.

    I’m also nearing 30 in March and I’m already dreading it as a milestone. All I can say is I feel your pain. I know how hard it is and the guilt you feel for those closest to you like your mum and partner. We put so much pressure on ourselves to be well, improve and be super happy, yet we’re battling with a chronic illness exceptionally well even though we feel like we’re failing at life.

    I hope you find some comfort in knowing others are suffering too although I know you wouldn’t wish this on anyone. We will get there eventually, they will find a cure soon and we will have our lives back no matter in what shape or form. Keep going, we’ll get there together one tiny step at a time X

  4. Victoria Prince October 17, 2017 / 9:55 am

    You just made me cry – it’s the 30 thing! lol I’m am slightly older than you, and I will be 30 next June. I struggled massively with 29 (my last “20-something” birthday) and as the last few years seem to have gone by quicker than ever I just feel like life is totally passing me by :(

    Due to misdiagnosis, mismanagement and a host of cock ups I had a totally messed up childhood – think patchy schooling from the age of 10 and none at all from 12. So as a teenager I had no friends except for those online (who were all hundreds of miles away, and interestingly mostly much older – I suppose I had to grow up fast!) and by the time I was in my 20s and rediagnosed it was too late to undo much of it…so I am now pushing 30 with no qualifications, no local friends to speak of and having never even had a boyfriend of any description, much less a serious relationship. Those teenage years are so important socially! I am also severely disabled and after complications from what should have been a minor op I’ve had a particularly bad couple of months with at the moment seemingly no end in sight…and it’s so hard :(

    I struggle the most with the relationship and family aspect – I keep telling myself things can change so quickly, but at the moment it doesn’t feel like I will ever fall in love and I really can’t see me ever being able to manage children. I don’t even know why I’m writing this really! I still haven’t given up hope, and on days when energy is a bit more available things seem more hopeful…so I guess I keep trying not to think too far ahead, and hoping that some day does eventually come!

  5. Cathryn Hage October 17, 2017 / 12:49 pm

    Given the ups and downs you have been facing in recent times, the one thing that remains UP is your strength in character. Never giving in and being positive takes some doing. Take inspiration from other Lymies, share knowledge and remember stumbling blocks and stepping stones look the same its what you do with them that matters xx C

  6. Lisanne October 20, 2017 / 5:17 pm

    Hi beautiful lady

    Just wanted to let you know that I am so glad you had the courage and class to write this blog! You’ve made me feel a lot less scared and alone by doing so. I am one of those people who hasn’t posted on my personal social media account for almost a year, in which NO improvements have happened. It’s been a year of feeling stuck, disappointed, frustrated, confused and so on…but it’s also been a year in which I’ve learned a crapload about myself and have grown even closer to my favourite people. It seems you’ve had the same experience!

    Things will get better, I am still so sure of that. You deserve it more than anyone and I can’t wait to cheer you on when those improvements start happening.

    Keep on keeping on, Sophie. We’re with you! xxxx Lisanne (lily jaco)

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