Living with a Chronic Illness.

Hello, Jon here! It has been a while and for that we can only apologies. It has been a month since we last posted (so much for our “few blogs a week” target). The last month has been an exciting month as well as a tough month in the Gathford house! This being the first year where we both don’t get to enjoy the summer holidays we once loved so much due to our jobs has provided a challenge for both of us. Hannah has been working hard getting new editions of the magazine out, going to Expo’s and dealing with offices in 30+ degree heat. I meanwhile have been working hard in the clinic and have just started football season again.

It hasn’t all been work work work. We got to go away for the weekend with my extended family. This saw us drive 5 hours to Church Stretton, Shropshire, to spend a weekend in a lovely house with lovely company. A wonderfully good time was had by all. We also have a trip planned with some friends to visit Hannah’s mum up in Cumbria in a few weeks time which we are very much looking forward to. You’ll hear more about this in future blogs.

Although the last month has had many enjoyable times, It has also been a tough month. I’ve started football season again so our time spent together has decreased due to evenings and weekends being taken up by training and matches. I’m having a great time with my new team “Moneyfields FC” who are based in Portsmouth, but it is also hard missing out on time spent with Hannah.

Throughout all this, finding time to sit down and write a blog post together has seemed nigh on impossible. Thinking about what to write after a month away has been tough, but after much thought it feels like this topic is the right one to tackle. This is likely to be a blog post that jumps around a bit from place to place because i am writing it. Bare with me on that one, but I feel it is important to share.

We both live with a chronic illness. Those who know us personally will be aware that Hannah was diagnosed with Epilepsy at 16 years old. A tough thing for any teenager to come to terms with. Last October we celebrated her being two years seizure free – we hope to celebrate three this October – but living with a chronic illness like Epilepsy isn’t just about the seizures, it is an everyday fight. A fight we take on together because although Hannah is the one diagnosed with Epilepsy, it’s a condition that effects the day to day – which she shares with me.

Looking back at our past, that fight has been prevalent throughout our relationship. In fact, Hannah’s Epilepsy is what brought us together and gave us such a strong friendship in the beginning.

I had known Hannah for only a few weeks when my phone rang. It was Hannah’s name, which was odd because we weren’t on phone calling terms yet. Sure, we had chatted a few times when our paths crossed, but she wouldn’t call me. However, this time was different. Hannah explained that she had just had a seizure on the road outside the university, the ambulance had been and she was okay, but she needed someone to walk her home and sit with her until her housemate Cerys got back. No one else was around so she thought she would see if I could help. So down to the university I went. We walked back to her house, set Hannah up in front of the TV wrapped up in her duvet while I made a cup of tea for us both. We sat there for hours, Hannah introduced me to the Clangers and Bagpuss (only 18 years too late) and we chatted. This is where our friendship grew and kept on growing to where we are now.

Epilepsy is a condition that many people misunderstand. If you ask someone what they think Epilepsy is they will likely say something along the lines of “a condition that causes someone to have seizures”. To an extent they are right, but Epilepsy is so much more complicated than that. Hannah can suffer from a number of different symptoms which range seizures to face tightening (where the muscles in her face and neck spasm uncontrollably) to fatigue. To control this, she takes two hefty doses of medication a day. Anyone who takes medication regularly will know there are always side effects. We took a look at the possible side effects of Hannah’s medication and the list seemed endless. There were over one hundred listed side effects. Now obviously just because they are listed doesn’t mean someone will experience them but they’re listed for a reason and this is where the day to day battle normally takes place.

I wanted to write this blog to give a different view point on living with a chronic illness. While I don’t personally suffer from one myself, living with someone who does means you are there going through the struggle with that person day to day. You see both the good times and the bad times.

Hannah’s symptoms and side effects from the medication change on a daily basis. Some days she will feel on top of the world; other days she will be anxious, tired, worried and run down. While Hannah hasn’t had a seizure for over two years, we have experienced many tough days. A common hurdle we face is tiredness. The past month has been very tough due to our working commitments, plans and the unusually hot weather on top of all that. All this adds up and causes Hannah to suffer from a lack of energy. Some days she comes home from work and crawls right into bed, emerging only to eat and be coaxed into drinking water. It also means that some days she just isn’t able to go out and do things other people take for granted. That is something we have learned to plan around and adapt to. We have amazing friends who completely understand that sometimes we need to cancel or adapt plans because Hannah would struggle to cope.

A big thing that both myself and our friends have had to learn to understand is that sometimes even though Hannah is present in the room, she may not be present. Often, she isn’t vocal or she may seem a bit more anxious than normal. She can be distracted and seem distant. Sometimes I have to repeat myself because half way through a sentence Hannah switched off. This ‘brain fog’ is caused by tiredness due to Epilepsy and/or side effects of her medication. Her medication can cause her to become very anxious even in situations she has experienced a hundred times before. At times, even asking for something in the supermarket can be a step too far because of the anxiety. Brain fog also causes her to struggle with words, forget what she is saying and lose concentration half way through a sentence. This is part of everyday life for Hannah and those around her. Sometimes she calls strawberries ‘the fruit that’s like roses’ or a dog ‘like a cat but bigger and wags’, does that mean we stop inviting her to things, talking to her or involving her? No, it just means we have to adapt. I know for a fact that we would all repeat ourselves ten times if it meant Hannah could join in.

One of the scariest times for me is when Hannah feels she is going to have a seizure. Luckily this feeling doesn’t happen very often. We go through periods where it happens more regularly, other times the feeling won’t come around for months. This feeling of an oncoming seizure can happen anytime throughout the day, but the most common time is at night time. Hannah’s seizures are brought on by tiredness and stress, so it makes sense for this to happen later on in the day.

This feeling of a oncoming seizure differs depending when it happens. During the day if Hannah feels it happen she will go quiet and still. I ask if she is OK (fully well knowing she isn’t) and she will tell me “I’m going to have a seizure”. On the inside my panic stations are in full flight, on the outside I need to remain calm so I can calm her back down to a place where she feels okay. As silly as it sounds, I’m lucky I have experience working as a pitch-side physiotherapy. When a player goes down with a nasty injury I need to stay calm on the outside, not only to keep my head, but also to help the player calm down. Although the details of the situation are different, this is exactly the same as when Hannah feels she may have a seizure.

At night it is a very different scenario. Normally I have fallen asleep. Hannah has either gone to sleep and woken up or has not been able to sleep at all. I will be woken up by Hannah calling out, tapping me to get my attention, or by hearing her crying and panicking. Once again, in the situation I have to remain calm. Which is a lot harder when you have just woken up. My role is to try and reassure Hannah that everything is going to be okay and that I am not going anywhere. A good way to calm her down is to distract her. Sometimes this is done through talking, sometimes through music, and sometimes by stroking the left side of her face. Hannah often says she feels the left side of her face go fuzzy or funny during an episode, so it reassures her to feel pressure and sensation on that side. Sometimes I sit there for hours stroking that side of her face, even after she drifts off to sleep.

The hardest thing, especially at night is the horrible cycle Hannah goes through. She often feels like a seizure is going to happen because she is tired and stressed. This then causes her to panic, meaning she feels more stressed about the situation and gets more tired. Then the cycle of being tired but not able to sleep because of the stress leading to more tiredness and stress starts. The only thing on my mind when this happens is “I need to break this cycle”. On a good night, I can break it in 10 minutes, other times it can take over an hour.

Obviously this is a horrible thing for Hannah to go through. For me, it is an absolutely terrifying experience. I can’t even begin to imagine how it must feel for Hannah to go through it and that is horrible. To see someone I love be convinced they are going to go through something so horrid is hard. I often stay awake for hours after Hannah has fallen back asleep just to reassure myself she is getting the rest she needs. I can openly say that for a long time the only time I ever prayed was during these nights. Thankfully, for the entirety of our relationship so far that prayer has been answered. Big props to the big man for that one!

Day to day life can be hard. Some days it can feel like I am fighting a solo battle with the housework. Sometimes I can feel a bit lonely. I can get frustrated, annoyed and upset. I can also feel helpless and like I’m making things worse. Hannah and I have always been so honest with each other, I tell her these things and she tells me her things. We constantly work to understand how Epilepsy effects both of us. While Hannah is the one diagnosed with the condition, it effects both of us and we both suffer emotionally and physically. But we keep working, we keep talking and we keep overcoming.

I think we have got to a very good place in terms of understanding. If Hannah is too tired to do something with the house I understand that. I know she needs that rest, so we adapt. Just like Hannah knows that even though she is very tired, sometimes just sitting with me while I clean makes the world of difference for me. We have learned to jump over those hurdles and we always will when new things come up. Sometimes it is the little things that make a world of difference.

Although Hannah has epilepsy, symptoms and side effects. Living with her is an absolute honour and joy. For every bad med day we have, for every tired day and near seizure, we have ten times more happy days: funny stories and enjoyable moments. I wish with all my heart that Hannah didn’t suffer from Epilepsy because of the toll it takes on her. But we became close due to Epilepsy. Our friendship and relationship was developed through that and is so much stronger as a result.

We are also so lucky to have the most understanding and supportive families and friends who are there to support both Hannah and myself. Thank you all so much for what you do.

Hopefully I have been able to explain how epilepsy effects our day to day life – I’m not the best writer and have probably missed things out. Remember that people who suffer from disabilities do not always have visible symptoms. On top of that, people with the same disability don’t always have the same symptoms. Some days they can feel on top of the world and some days it is a victory that they moved from the bed to the sofa. I take my hat off to everyone who deals with a disability or chronic illness – be it mental or physical. I also doff my cap to anyone who helps support, care and love people who are suffering in anyway. To this day I am still blown away by how much Hannah achieves and takes on! She will always be my inspiration (I know she will have a go at me for that).

Lastly if you have any questions or comments about our life with epilepsy or anything, we would love to hear from you. Send us a message and we can have a good old chin wag! Communication is so important.Thanks for sticking with us while we have been absent. We will be posting more over the next few weeks and have lots of exciting things planned.