30 Days of Blogging: Day 1 what’s wrong with me?
Sunday, March 01, 2020Like I said before my friend Oli is doing a version of this over on his YouTube channel (here)and he made a video explaining his multiple conditions so again, I’m nicking his idea. Oli I promise I won’t just steal all your ideas but it seemed a good way to start my 30 days.
Most of you know, I have a few obvious conditions but I probably have more than you think! This isn’t at all a pity plea, or a toP trumps of the medical world. Just informative especially for new readers.
1) Cystic Fibrosis: is a genetic condition that effects every part of the body but usually the lungs, stomach and pancreas are most badly effected. The body produces a thick sticky mucus that clogs the organs which impairs their function. Excessive mucus in the lungs means they become a breeding ground for bacteria, constant infections cause scarring and damage to the lungs which often leads to the need for a lung transplant. Which leads me nicely on to.....
2) Double Lung Transplant: When lungs become so damaged by Cystic Fibrosis it often comes down to a lung transplant or dying. Transplantation is not a ‘given’ you have to be extensively tested to make sure you’re ill enough to need a transplant, but not so ill you won’t be likely to survive the big operation. Transplant is also not a cure for CF. Only the lungs are replaced and because CF is genetic, it can’t damage the new lungs. However CF is far reaching as I will discuss further on.
3) Pancreatic insufficiency: directly linked to CF I don’t produce the enzymes I need to break down and digest food. I take replacement enzymes when I eat to break down food. Forget to take them and any CF patient will tell you, stomach cramps and being attached to the loo for long periods of time will ‘encourage’ you not to forget again!
4) Cystic Fibrosis related Diabetes: its not type 1 diabetes or type 2, it’s a type specific to CF sufferers. The mucus I mentioned earlier clogs the pancreas until it fails to produce insulin anymore. Many Cf patients take steroid as part of the treatment regimens which is also a factor in developing diabetes.
5) Osteoporosis: malnutrition from not digesting food adequately often causes loss of bone mass.
6) Liver problems: specifically for me, an enlarged liver and Spleen. I’ve mentioned before that liver stuff terrifies me but *touch wood* I haven’t had many issues with it. There is damage, it’s not ideal but it’s working and I love it more than I can say for that. Does make surgery riskier for me though.
7) Stomach Cancer diagnosis: I was diagnosed with stomach cancer in late 2017 completely out of the blue. In order to have a transplanted organ and stop the organ being attacked by its host body, you must take anti rejection tablets for the rest of your life. These are strong, toxic drugs that keep me healthy and alive, however they have nasty side effects of which cancer is one of them. It’s not that common but obviously terrifying. I received a year of treatment; chemotherapy, surgery to remove half my stomach and then more chemo which has so far kept the cancer away.
I am high risk of cancer returning and it becomes very involved when needing treatment as my other conditions prohibit what I can have.
I’m regularly checked with blood tests and scans to make sure we are on top of the situation.
8) Sinus issues: same deal with CF in other areas, thicker mucus, more infection. Often sinus infections and facial pain. Past surgeries.
9) Chronic Fatigue: I have a degree of adrenaline insufficiency but after extensive tests, fatigue is just something I live with and can’t really be improved much. It’s soul destroying because you never know how you will feel on a daily basis.
10) Chronic pain: I get pain in my joints, hips and mainly back. My pain relief of choice is oxycodone a signed for drug but works well generally. Standing in particular really causes pain but bad as it sounds anything can trigger me. My muscles are also very weak made worse due to steroids. I’m also hyper mobile which means I’m very bendy so I require even more muscle support which I can’t because of the steroids and weakness.
11) Depression and anxiety: Conditions that can obviously effect anyone but for me are definitely influenced by my physical health tremendously. Specific links include survivors guilt that I feel both for friends who haven’t survived the same situation as me and for my donor.
12) Immunosuppression: My immunosuppressant does what it says on the tin. Having a repressed immune system means I pick up viruses, infections and anything going much easier than others. Therefore I take extra measures with using tea tree oil (a natural antiseptic), regular hand washing, using hand sanitizer and often traveling at quieter times to avoid crowded public transport. If anyone in the family are ill I avoid contact even if that means missing out on family gatherings or seeing friends. I’ve also had times especially during chemotherapy that I’ve become neutropenic which means I’m basically without any protection from my immune system. During these times I’m either kept in isolation in hospital or at home, not leaving until the numbers of white blood cells start to improve.
13) Unspecific but my conditions effect me everyday. Sinusitis causes headaches. I’m always in some degree of pain. I get fatigued and have to cancel plans both short term and plans for the future. My stomach bless it, has gone through hell and back and often has issues with pain, bloating, rushing to the loo, all of which are very uncomfortable.
My conditions impact every day of my life and my needs change throughout the day.
And I *think* that’s it. I may have missed a couple but that’s all I can think of tonight! I hope I haven’t made you depressed as the post wasn’t in any way meant for that. I just wanted to explain my conditions, tell you something you might not know and fill you in a little more about me. Even with all these issues, I still live a life. Not always the kind of life I want and I get plenty frustrated but it’s still a life and I’m still here.
If you’d like to know more about Cystic Fibrosis and it’s associated conditions please visit The CF Trust.
For more information on stomach cancer and cancers in general please visit Macmillan Cancer Support.
Macmillan Cancer Support.
5 comments
I will try not to steal you and Oli's ideas too much either!
ReplyDelete😂 temptation! X
Deletei can’t believe that gorgeous smile on your face while all that crap is going on in your body!! you are one very strong lady! i have an auto inflammatory condition that causes chronic pain, sometimes quite severe, even though i am taking medication. i also have a few other medical issues, and i am so good at feeling sorry for myself. i don’t want to downplay the fact that i do have a painful disease, but i have never handled it with the grace that you do. you are an inspiration!!
ReplyDeleteTrust me, that smile is gone as much as it’s on! Don’t put yourself down, you are doing great! It’s so difficult to keep going every day and we wouldn’t be normal if we didn’t feel sorry for ourselves sometimes x
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