Blog #4 | Where have I been!?

Hi guys! Happy Sunday to you all, Sunday is my more lazy than usual day so I’m using the time to write an update on my life and ramble on for a few paragraphs so sit tight, as you know my personal blog posts aren’t always gaming related but thank you to anyone who takes the time to read!

Cystic Fibrosis

My last blog post was back in January, not a lot has changed since then other than a few personal things I won’t go into, and my health is taking it’s usual nose dive and I’ve needed some time to rest up and focus on getting better, it’s incredibly important I take care of my health. I have Cystic Fibrosis (CF) which is a genetic lung disease, which is life shortening. However this doesn’t stop me from living my life the way I want, it just means things are a lot slower and paced for me and recovering from a day out, can take weeks. One of the main reasons TGG was launched is to fill that gap in my life where I feel useless to the ‘working world’ and I needed something to occupy me and give me a focus. CF is progressive and won’t stop, it’ll always affect my life. Over the last few years, I’ve lost a number of friends with CF all between the ages of 16-28 and it doesn’t get any easier each time the news is broken about a friend passing but it does make me feel vengeful, I just want to get out there and kick it’s backside and keep living (much to peoples disappointment) I don’t plan on going anywhere anytime soon.

Since the launch of the blog, I’ve felt I could focus on something important almost like a job, unpaid of course which is what makes it therapeutic and calming for me, there is no pressure to get things out there because I’m in control of what my hours and contribution are. In October I spent 3 weeks in hospital with pneumonia and when the antibiotics started to kick in within a week I was able to write posts which kept me occupied in the hospital unfortunately the 2nd week of my stay things took a bad turn, but that’s the great aspect of blogging, it’ll always be there when you get back! I feel at ease that there is no pressure.

Over the last 3-4 weeks, I’ve not posted much. I’m having what in CF/medical terms is known as an exacerbation which happens every 4-8 weeks which is treated with IV antibiotics. In the coming weeks I also have appointments at Exeter and The Royal Brompton & Harefield hospital due to some complications I have that are ongoing, sometimes hospitals further up the country have answers my consultants down here don’t, this is mainly due to the volume of patients bigger hospitals have and experiences they’ve dealt with, the hospital I go to where I live has a smaller volume of CF patients in their care so sometimes they refer us to other hospitals. A second opinion is often helpful and hopefully I can get some light shed on my issues.

I also get health care at home which means when I’m not in hospital, I have nurses and physiotherapists visit my home to help me with my treatments and take bloods/sputum samples so they can keep on top of what’s going on. More often than not an exacerbation can happen over night and a cough can develop quickly to something quite nasty. I have a constant cough as do most if not all CF patients so living with headaches and fatigue is a daily struggle, when a cough develops into something nasty this often is the constant reproduction of thick mucus on the lungs, making it incredibly difficult to breathe and coughing fits which cause pressure and lack of oxygen causing us to pass out, which is the stage we usually give in and say it’s time to go into hospital, this is the 4-8 weekly cycle, it can be less if we’ve come into contact with people who have a common cold, it will turn into a chest infection within days.

Often a CF patient will suffer with various chronic strains of infections, I grow two chronic strains which means they are unlikely to not grow on my lungs, Pseudomonas and Staph Aureus. When I was younger they were not chronic but as a CF gets older and we also have Bronchiectasis alongside CF which weakens the airways, the lungs weaken after developing infections so it is harder to eradicate and becomes chronic. Mucus on the lungs itself causes tiredness, frequent dizziness and vomiting due to the infection which causes weightloss, never a good thing for CF, our weight is our lifeline and inner strength but CFRD (CF related Diabetes) makes our high fat & calorie diets a little more difficult to manage. This is why most CF patients have a carer, mine are my mum and partner who aren’t able to work full time due to my almost constant medical needs. Daily treatment consists of a concoction of medication, around 40 tablets daily and nebulised treatment and physiotherapy all of which take up a lot of time in a day, which when I’m at my worst is almost doubled, alongside I have CF related Arthritis (Rheumatoid) which I see consultants for in Exeter. I have a number of friends who have CF blogs which is amazing for raising awareness, having people aware of what CF is and the lack of funding it gets for research is great, because more people become aware of our daily lives and want to support and donate to the CF trust.

Ultimately the most life changing treatment for CF is a Lung transplant. However the requirements to meet in order to have one are rigorous and take years to plan to get on to the transplant list. I have had a number of friends have a transplant with both amazing and heartbreaking outcomes, so it is a huge decision to make when the time comes. The courage of those who have gone through with them, I can’t even measure. The mental health behind all of this is something incredibly touchy, the fear of what could and will happen is something I have had to have psychiatric therapy to calm my anxiety and find ways of dealing with it, the thoughts are always there but having a family behind me and friends going through the same as me, to talk to is something that helps an incredible amount. Nobody wants to leave their family and friends behind, but to be alive today is a blessing in itself so I look at the now and not the when.

I just wanted to write about this to give people an understanding of why I may not post frequently some weeks and also any awareness is good awareness! The more people know about what me and my friends go through, the better. There are trials for groundbreaking treatment which are not currently funded by the NHS so only a select amount of people can benefit from the treatment, one day the generations being born now with CF won’t have to go through what CF patients go through  now.

The long and short, this is my life and I tend not to talk about it much, but having TGG gives me an opportunity to shed some light on unseen, invisible illnesses and that the exterior isn’t always an accurate depiction of the interior, what we chose to show may be completely different to what is going on and nobody, with ANY illness visible or invisible should be judged especially if you have no idea what that person goes through, we all cope and struggle in our own ways, what might be good for you may not be good for somebody else, so be kind… be accepting and think before you speak.

To all those who support us at TwoGirlsGaming, you’re doing a lot more than just that in our eyes, you’re part of this journey, making us smile with your feedback and kind words, the love surrounding us on our TGG social media is a real motivator and we wouldn’t be able to do this without you. We adore every single one of you. Thank you for being there.

-Jet

3 thoughts on “Blog #4 | Where have I been!?

  1. Sorry to hear you haven’t been very well recently because of your CF, must be so tough. Your positive attitude shine though, stay strong. Always enjoy reading TwoGirlsGaming, such a great blog 🙂

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  2. I am so sorry that you have to got through this and I pray that there will be a breakthrough within out lifetime so that you do not have go through this anymore. I am very happy that you use the blog as your outlet and thank you for providing the awareness by sharing your story. I didn’t know exactly how much CF people have to go through, only that it can cause people to be out of commission for a while so I am grateful for you sharing this with us. I hope you feel better soon.

    -Luna

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