A typical day for me starts bright and early at the sound of my alarm. I have to get up to this immediately, otherwise I will never get up. It is normal for individuals without Lipodystrophy to still feel tired when waking up, however, when I wake up the fatigue is intense. This is one of my biggest struggles which lasts throughout the day. It can often feel as if I have barely slept and I can only describe it as a feeling of desperation for sleep. I also often wake up with sore muscles, similar to the pain you’d get after weight lifting, without having been to the gym!

I try my best to pay this fatigue and pain no attention and get ready for my day. First, I check my blood pressure and blood sugar levels, then I grab some breakfast and take my morning medication. Afterwards I head in the shower, get dressed, and then start my day job. Since the pandemic began, I have worked from home which means I spend more time sitting down than I ever have. I try to go for a walk before I start work to help relieve the fatigue, regulate my blood sugar levels and loosen up my sore muscles.

I work in a fast pacedrole as a web developer. Having health conditions can certainly make this tougher, and I often worry if my fatigue is hindering my job performance. As a result, I compensate by working extra hard, which can often make me feel burnt out or overwhelmed. This also triggers my anxiety and I can find myself in a negative thought cycle. This is something I am actively working on, with the hopes to stop this from happening. I give myself one rule, and that is to try and take my full hour lunch every day. Instead of sitting down for the hour, I use the whole hour to walk around my local town or park. This helps my stress levels, fatigue and blood sugar levels. I choose a nice playlist to listen to, and this is my favourite most peaceful part of my day.

As I mainly control my diabetes with diet, as well as Metformin (a tablet to help control blood sugar levels), I don’t check my blood sugar levels regularly. I tend to eat relatively low carb, and I often eat my lowest carb meal at lunch so I don’t have to worry about spiking my blood sugar levels. I always eat my lunch and take my medication, before I head for my walk.

Once I’ve finished work, I am often vulnerable to feeling exhausted and low. I usually go for another walk to try to perk myself up. On bad days, I feel so tired I don’t want to  cook, socialise or do anything. These are the days I can be susceptible to anxiety and/or panic attacks. When this happens, I try many different techniques. I’ll simply talk to my partner or family, I’ll try a few mindful exercises or I write in my journal – which is a new form of release I have started. I make sure I try to follow some of these techniques as it helps me to not feel so alienated or hindered by Lipodystrophy. It can help me take my mind off worrying about the future and the progression of this disease. 

On good days, I can feel really positive and have a fun and productive evening. Making dinner and planning for my lunch the next day is one of my main tasks, as I eat a reduced carbohydrate and low fat diet. I’ll take the last lot of my medication and enjoy my dinner with my partner.

My last struggle of the day is a cruel one, after spending all day desperate to sleep, I can often find myself struggling to fall asleep when I go to bed. Reducing my screen time, removing my tv from my bedroom and avoiding caffeine after 6pm has helped to improve my sleep hygiene. However, like many of us, I can get sucked into looking at my phone.

So there you have it, an average day for me in a nutshell. The good and the bad. I try my best to stay positive, remain grateful that my health isn’t as bad as it was before I changed my diet and lifestyle, and most importantly, not to let Lipodystrophy define who I am or what I achieve. I have joined Lipodystrophy UK as a trustee and it has really helped me to feel ‘heard’ and hopeful for the future. I am excited to be a part of Lipodystrophy UK and help other individuals like me.You can find out more on our website: lipodystrophyuk.org (new website release coming soon!).

We would like to thank Becky for sharing this inspirational story with us. If you’d like to know more about Lipodystrophy then please head to lipodystrophyuk.org. If you would also like to get involved and share your experience with Ataxia or another rare condition, please get into contact with us through our social media channels below.