A letter to those closest to me, helping me through my battle with lyme disease

Motorised beach wheelchair with boyfriend

Mum & Dad

To those closest to me,

I know you are always telling me I do not need to thank you… but thank you!

One of biggest things I’ve realised since being ill is how just amazing you are. I knew it already but this life-altering experience has left me feeling more grateful than you could ever know. I’ve spent many a night lying awake thinking about how much I want to show you how lucky I feel. I often feel guilty that you spend so much of your life helping me through this, and I cannot do much to repay you.

We don’t really like to use the word carer or caregiver as I pride myself on doing as much as I can for myself. I am determined to make my own hot water bottles, to help cook, to do a little bit of washing up now and then. But in reality you do a lot for me and you never question it, you just do it. You run my everyday errands, pick up my prescriptions, pay the bills, do the food shopping, you cook, you clean, you make the bed and more. I don’t think looking after your 27-year-old daughter/girlfriend was something you ever envisioned but you do it and you very rarely complain.

I have struggled a lot psychologically over the years. You sat with me night after night, day after day, reassuring me and calming me down. Although I am a lot stronger mentally now, thank you for listening to my many worries and anxieties and providing hope and positivity in those dark hours.

Thank you for adapting to, and accepting the fact that I need to use a wheelchair when we go out. No matter what the terrain or weather, you push me in my chair just so I can see the things I long to see. You have become accustomed to the steep Cornish hills, cobbled paths and huge lack of drop curbs!

My body shape is constantly changing as a result of my illness. I no longer wear make up and spend a lot of my time in baggy PJ’s. When I go through phases of low self-esteem thank you for trying to make me feel beautiful again.

Over the 8 years that I’ve been poorly, you’ve always made time to take me to countless appointments and procedures and you advocate for me when I’m too foggy/exhausted to ask the right questions. Thank you for making sure we get everything we possibly can out of every appointment.

Thank you for always bringing home little treats from the supermarket to brighten my day. The feeling when you pull out a tub of my favourite ice-cream/yoghurt never gets old!

Thank you for cooking me delicious dinners when I cannot stand because my legs are screaming in pain or I’m too weak.

Thank you for taking my little dog out for the walks I wish I could take him on. If it wasn’t for you, I wouldn’t have been able to get him. He’s brightened up my world no end.

Thank you for giving up work for several months to focus on researching Lyme Disease and the best clinic for me to and get the treatment I need. Even now you’re back at work you still spend a significant amount of your spare time doing the same.

Thank you for structuring you’re days off work around me. When I want to try and get out for an hour, that is your priority and everything else fits in around it.

Even though I tell you I can manage, thank you for making sure you’re in most evenings with me to keep me company, to cook etc. This means sacrificing lots of other things that you could be doing. And when you do go and do those things you rush home earlier than you need to to check that I’m OK.

Thank you for driving me to-and-from Cornwall in your van even though you don’t live there just so that I have space to lie down in the back.

Thank you for holding my hand/cuddling me when the pain is simply too great.

You always know when I’m not “all right” or “OK.” Thank you for never pushing me to tell you what’s really wrong and letting me tell you when I am ready.

No matter how upset or low I am feeling, Thank you for ALWAYS managing to make me laugh.

Thank you for trying so hard to understand, even though I know it is impossibe.

Thank you for acknowledging my achievements and small victories and for knowing how hard I try every single day.

More than anything I want to get better so that you can be truly happy again and live life to the full! I know we will get there, but in the meantime please know that I am so grateful for everything you do and for your incredible support. This journey would be so much harder without you!

Me and my boyfriend

SS x

 

2 Comments

    • Sophia July 21, 2016 / 10:03 am

      Yes I absolutely would! Doesn’t stop me feeling guilty sometimes though unfortunately. I am so lucky to have such an amazing support system and it sounds like you have the same :)
      Thank you, I am going to the US hopefully later this year! xx

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