Hello & Welcome to our blog!
We’ve decided to start this blog together to show the reality of being in a ‘long-distance’ relationship with the extra challenges and difficulties of both being chronically ill.
We hope to show the reality of our relationship; the ups, downs, good times, harder times, challenges, obstacles, and be the open and honest blog that we, (just one of many disabled couples I’m sure!), has access to, and the contacts we wish we could ask questions and advice from when we needed it ourselves.
We thought we’d start off our blog with our honest thoughts and feelings about our own illnesses as well as each other, to know that any and all emotions are completely normal..especially if you don’t know about your partner’s illness before meeting them.
Sam:
“What are your thoughts & feelings about your own illness?”
When I look at my life I know living with a life-limiting illness may be really hard for some people it is for me sometimes when sad emotions appear. Adapting your life is key there is no point being down, thinking about what life would have been like without a illness you need to appreciate everyday and grab all opportunities you can.
Accepting any chronic illness is hard but when you finally accept it you can look at life in a different way. Some people may never accept there conditions but everyone has support from friends, family and medical professionals including those that have accepted it.
I live everyday to the fullest, I stay positive about everything and if something gets me down I talk about it. By talking to others with my condition I understand that we all go through similar things and that has helped. Doing things you want helps too as you don’t need to say no you need to try everything you can.
“What are your thoughts and feelings about Katie’s illness?”
Before Katie became part of my life I’d never come across her conditions properly although a friend of mine does also have the same conditions. I’d never researched it before but when I did what I read was very scary. Katie has so many things she has to cope with including dislocations, Anaphylactic Reactions, regular fainting episodes, recurrent sepsis and multiple tubes to keep her body working safely.
Most days I worry about Katie especially if she has a severe seizure, anaphylactic reactions or if sepsis reappears. I sometimes get upset with it. Katie keeps me going as she’s really strong, caring, kind and explains her conditions in detail so I know what’s she goes through.
Katie is always happy to explain things to me and she’ll always answer honestly. I admire her strength through everything. I also admire everything about her and she knows how to treat me right even with her conditions in the background. Her love keeps me going through hard times when she isn’t well. It’s scary but I’m going to support her always.
Katie and I enjoy everyday we don’t look at time left but on our future together. We have so many plans and we will succeed at all of them.
Katie:
“What are your thoughts & feelings about your own illness?”
I think that when you’re chronically ill, you go through a rollercoaster of emotions, including grieving for your ‘healthy self’, before you reach anywhere close to acceptance, and to be honest I’m not sure you ever fully accept it (or if you do, I haven’t done so yet!). Time makes you realise that you have no other choice other than to appreciate every day but also to be grateful for the small things - my life expectancy is normal for example - something I’ve now realised is something I’m so appreciative of. It’s all about knowing what your boundaries are, and adapting your life around them. That way, you gain more confidence, and learn that there are ways to achieve the goals you want.
“What are your thoughts and feelings about Sam’s illness?”
Before I met Sam, I didn’t know anything about his illness (and he’s guilty of keeping a lot from me too!). The first thing I did was turn to Dr. Google and my heart dropped. A mid-twenties life expectancy? Breathing problems needing support? A weakened heart that could fail at any time? It was the opposite of what I wanted to read, and still I have times when I completely break down at the thought of losing him. But Sam has the strongest, most positive outlook, and I know that he’ll outlive all doctors’ predictions without a doubt. He has reached a point mentally where I can ask him even the hardest questions and he’ll answer them honestly. He knows he won’t get any better and his condition is progressive, but I admire everything about him and he treats me better than I could ever hope to be treated (despite everything he has to face, and I’m gradually getting my head around taking the focus off of the amount of time we have left, and turning it more towards enjoying every day we have together as well as planning towards a future together too.
So, just to reiterate what I said at the start, don’t be afraid to contact us about anything from our conditions to our relationship - we’re here to help as well as show you the reality of our relationship and how we adapt our lives around our illnesses. If anyone else find themselves in the same or similar position - send us a message by going to our contact page; we’d only be more than happy to chat!
Lots of love,
Katie & Sam xxx
