For life's little ups and downs.

A rather quirky, funny and sometimes daunting look in to the life of someone who has a lot of health problems but does their best to keep positive. Punctuated by guinea pigs, anime, superheroes, transforming robots and cross stitching.

I started this blog to tell my story, about who I am and what I do. On top of the health problems and raising awareness for those, I also use my blog as a way to help promote other causes, particularly ones which affect the most vulnerable. I live with a number of different and complex health problems but I refuse to let anything get me down. I know how it feels to be discriminated against or thrown aside. This is me. This is my life. I live it and do what I want with it. Nature sets the limitations. We set the boundaries.

About Me:

A blog about life. I live with Type 1 Brittle Asthma, Bi-Polar Disorder, Obsessive Compulsive Disorder as well as Various Allergies, Neutropenia, Crohns Disease (my IBS was rediagnosed as Crohns), Osteo and Rheumatoid Arthritis, PCOS and Osteoporosis and Heredetary Spastic Paraplegia. I have recently also been diagnosed with Sleep Apnea (which makes me stop breathing in my sleep) I live with these conditions, but I refuse to let them keep me down and out. I still try and make the most of my days despite being so poorly and having to rely on my wheelchair, nebulisers, nearly 50 pills a day and 2l/min of oxygen and CPAP.

I'll flap my broken wings and erase it all someday... You'll see.

Thursday 14 September 2023

Time for a Comeback!

I know it’s been a very long time between my posts. I can’t just write it off as a small thing, I’ve just needed some time to adjust to some new things and those have had some real impact on my life. I mean, I am OK, I’ve just been preoccupied is all. 


Over the past 3 months, I’ve been having my HbA1c monitored. This is a marker for diabetes. Diabetes is a major side effect from being on long term prednisolone, after 15 years I think it was inevitable. I wish it was simple and I could just stop taking prednisolone but my body no longer makes the cortisol hormone that we all naturally make what this means is that if I was to stop taking prednisolone, I would experience a life threatening Addisons crisis which would require urgent medical attention or I would die. 


I just wonder why it took so long for this to start happening or was it just going on for a while but no one really noticed. The thing is, when you’re already poorly and you feel unwell pretty much all the time, you stop noticing as much when something starts to happen. With my asthma, it’s like I’m aware of certain symptoms but I’ve become a little bit complacent about others as they’re always there, perhaps you could say that I’m just used to it.


So now body isn’t making its own insulin as well it used to and what it has made isn’t as effective anymore now either. Which means that my blood sugar is high and my body is not happy about it. I started noticing symptoms over the past few months. It started out as little things like weight loss, generally being tired all the time and spending more time in the “little girls room” after constantly wanting to drink. My potassium levels are suffering too so I’ve been having quite frequent spasms in my legs and a lot of twitching. 


Over all, my general health this year has been a challenge, and as usual, I’ve tried to face the challenges head on instead of running away. I have quickly adjusted to monitoring my carbs and take my insulin like a pro (although I learned that sometimes you’ll graze the capillaries and you will end up with a massive purple bruise), monitoring my blood sugars along with my peak flow. It’s just another piece of the puzzle that makes up me. 


How are my lungs? The simple answer is, grumpy. I think it’s more to do with the seasons changing than anything else. Or at least I’m hoping. I’ve had to remember that I’m not just managing one thing. There’s so much to keep an eye on now. Routine is especially important, especially meal times, and I have to keep to a strict regime of treatments that it becomes almost like a full time job. I’m not complaining though, the hours may be lousy but it’s not as bad as it could be! It’s all about finding perspective and understanding that yes, some days are just going to be better than others and accepting that it’s not something I’ve done wrong, it’s just what it is.


We have finally seen the oral surgeon, after nearly 2 years due to covid backlogs, and the good news is that he’ll do the two procedures I need done at the same time so I’ll finally be rid of that retained root and that bothersome wisdom tooth that have been causing problems for too long. When I asked whether the anaesthetic would be safe, he said the risks were low still and honestly the benefits outweigh them. Makes me wonder why the hernia surgeon was such an ass about it all, but all being well, I’ll ask to be referred to someone else. I’m not really nervous about having this surgery done, the root particularly has been bothersome as it’s been pushing near a nerve and causing infection after the extraction ended with the tooth breaking up and the nerve being impossible to remove in normal practice. I guess I’m looking forward to not having the thing there anymore and being able to move my face with no pain.


We’ve been working on getting rid of some bad habits. Getting out of the bedroom for a bit during the day, rather than living in one room all the time. We’ve been going out for walks a bit more recently too, well I’ve gone in my chair. It’s nice to have a little bit of time out of the house. Even if it’s only half an hour or so. I love autumn, especially in the wooded area near here, as the trees start to change colour. It reminds me of when I used to play in the woods as a kid, climbing trees or just looking for conkers and acorns or picking brambles off the bushes in my Nan’s back garden, much to the boy’s delight as they get some tasty treats too. 


Sonic is getting really big now and knows just how to manipulate everyone in to giving him food, he’s happy and inquisitive. Still screams at running taps or vacuum cleaners but otherwise he’s grown up so confident and playful. Percy has been settling into the idea of a forever home, instead of moving from place to place. It took some extra work to get him to trust us but he’s getting the hang of it now. The thing with a prey animal is find something they like and offer it to them so they learn that the hand reaching for them isn’t going to harm them. With all things, it’s a case of been patient and gentle with them, they’ll come to you sooner than you think, and there is nothing more rewarding than earning the trust of a small animal. I think that Percy may be up there with Kadaj as one of my success stories, another pig who had trust issues from the start. 


So yeah, that’s what I’ve been working with recently. I intend to blog more over the next few months as there’s so much I’m learning and trying right now and I want to keep going and pushing forward.


Til all are one.

Wendy xx

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