I was called back home on Tuesday, instead of travelling to Belfast for a well earnt break. Working full time and caring for Charlie is definitely taking it’s toll on my mental health and I wanted to have a break to reset and come back in a better head space. Unfortunately, it was not to be. When I got that phone call I can honestly say I grieved for the holiday and the break I thought I was going to have. It had been pretty full on already. So maybe I was being to adventurous and should have stayed in my lane! I had been down south to a conference with work. It was our annual conference on Saturday and because of the distance it meant travelling almost 80 miles south for on the Friday.

The conference and meeting my team was a fantastic experience. I work remotely so there isn’t much face to face meeting of any sort and we are spread out a bit, with some of us down south, Essex, Sussex and then obviously Birmingham way. So it was great to have that catch up and meet other members of my team. The conference as well was truly inspiring. I met lots of Wolfram Syndrome affected adults and learnt about their condition and how it affects them. It was incredible to meet so many people. Sunday evening I travelled down to Birmingham ready for specialist clinics that I support for Wolfram Syndrome. The plan was that I was in clinic Sunday, Monday and Tuesday. And then from Tuesday evening to Friday I was going to Belfast. But I never made it.

I had a call on Tuesday to say Charlie was not coping, he was very high maintenance and his Dad was not managing either. In short, I needed to come home. I abandoned my trip and headed straight there. I was devastated. I really needed this trip to mentally reset and look into why I have the feelings I do and what I can do to change them. It was really key to my mental health to have this mini break but it wasn’t going to happen. To say I was upset was an understatement. That, and the fact I have lost around £800 in flights and hotels. Double whammy.

I got home, and naturally, Charlie perked up. And I did wonder what I had gone home for? But getting him something to eat was difficult. And when he told me everything tasted “disgusting” I knew my priority was getting him a covid test. Then it was clear, why he was struggling so much and felt so terrible. Unfortunately, Charlie’s Autism meant he hadn’t been able to communicate with me that he thought he had covid or how he had been feeling to his Dad. And his Dad was struggling not understanding why he was being the way he was. No doubt, if I had been home I would of picked up on this. But, I wasn’t home, so the mum guilt hit me hard. I should be with him, not booking myself trips away. Who do I think I am? My reset is going to have to look a little bit different now. I still need it. It is essential not only to my mental health, but so I can carry on caring for Charlie and be the mum he needs me to be.

Covid is hitting my family now, we are all a little under the weather, all trying to do as little as possible and trying to stop any spread of it. Not sharing areas, and Charlie has mainly been in my bedroom with the tv on. And I am running around making sure he has everything he needs. Food still doesn’t feel or taste right to him. He is still quite lethargic, and not really communicating and honestly, the fear of getting covid in this household has plagued me. We managed to avoid it for 2.5 years but now it’s hit. By all of us not sharing areas and being considerate about the fact that one of us has covid and we want to avoid anyone else getting it, so far it is working!! It definitely was the right thing to do, to come home. Maybe I will regret it. Maybe I will find it difficult now for a long long time. We have such a busy few months coming up, and the fear that I won’t get any real time for myself is quite difficult to process.

I am however, looking forward to a much more relaxed weekend.

Georgina x