One more rabbit hole dealt with…..

On the Easter weekend I took the decision not to blog for a few weeks. My health had gone down another rabbit hole and I was finding it overwhelming to deal with. Now that I’m through the worse of the rabbit hole it’s time to start blogging again.

Yesterday I had surgery. The thought of this surgery terrified me. I am allergic to general anesthesia and have come very close to death several times in the past thanks to it. However, I have to give a huge shout out to my surgical team. My surgeon and anesthetist took my concerns seriously and agreed to operate using just local anesthesia and sedation. As long as I could tolerate it. If I couldn’t then they’d have to put me under but would use different drugs than usual in an effort to stop the adverse reactions I’ve had in the past.

Apparently, I’m a superstar! I not only tolerated it but I tolerated it under such mild sedation I was allowed to go home the same day, rather than stay overnight as we’d been expecting that I’d need to do.

Today, I’m sore and morphine is my friend. However, aside from the surgical site itself I feel pretty good.

I now have to wait three weeks for the pathology results of the mass that was removed. All along the belief has been that it’s probably benign, and in fact when biopsied last year it was found to be benign then. However, since then the mass grew and changed in ways that made it imperative that it was removed.

If it’s not benign and I need to deal with radiation therapy or chemotherapy then I’m ready for it. Nothing is as scary as the thought of the surgery itself. Now that I’ve survived that I can deal with anything.

It was a very strange few weeks recently as part of me was completely convinced that I wasn’t going to survive the surgery; that I’d have an allergic reaction and die. It was an odd position to be in.

Yet once I arrived for the surgery itself and it became clear how much work the day surgery team had done to be ready for me; setting up a completely latex free operating theater just for me; making sure everybody knew at every handover that I have multiple allergies, was absent my service dog, and that I’m deaf; I felt more optimistic.

So this is a HUGE shout out to the day surgery team at my local hospital. They made a terrifying experience as positive as it could possibly be and made me feel validated and understood throughout.

Now I just have to take it easy for a while and let everything heal. One more scar for my collection!

Sometimes being stubborn is what’s needed…

Sometimes it’s hard not to think that life is out to get me. On Monday, I posted about finally feeling like myself again having had a day out in the form of a road trip on Sunday.

On Monday I had some follow-up tests due to one of those rabbit holes we dropped down when trying to find the cause of my breathing issues, just as a precaution, and the results came in yesterday and they’re not good. So I’m back to that specialist next week.  First appointment after the holiday weekend.

It just seems that for the last year, or two, that every time I start to feel as so I’m getting a handle on life again that something else comes to try to knock me flat.

Well this weeble may have been slow in recovering her equilibrium over the past two years and it might be taking me longer to get back up; but I’m getting back up and will deal with this issue as it comes. I’ll also work hard at not worrying about the unknown and the suspected in the interim.

In reality nothing has changed since Sunday. I had the same issue then, I just didn’t know it. So I’m going to hold on to the good feeling from Sunday and use that to help me through the next few weeks.

I’m on the path to health and while it seems to be an especially twisty path I will get there!

I’m too stubborn not to!

 

 

If it’s not dog poop, it’s mud! Spring seems to be here….

This is my back garden right now. Though you should replace the toddlers with an elderly female shepherd/husky mix and an 18 month standard poodle. They seem to love the mud just the same.

So trips outside now include wiping 8 paws! Which usually means that one dog spreads as much mud around the floors as they possibly can while I wipe the other dog’s paws. Then the first dog gets in the way of the second dog having their paws wiped as they’re jealous of the attention. It’s an experience!

It’s a good job I’m working from home and nobody can see me from the waist down on any of the WebEx meetings that I attend. I’m usually covered in mud too by the time all 8 paws are wiped off.

BIzarrely both dogs are trained to wipe their feet but neither seem to be able to remember the concept! At least most of the time it’s just the floor which wipes clean pretty easily.

Then last night I got quite the surprise. Rather than making my bed yesterday I’d pulled all the covers back to air out the bedding. Apparently at some point I forgot to shut the bedroom door for in a perfectly straight line, right across my king size bed, were two lines of 4 prints. It almost seems a shame to wash the sheets they did such a great job of getting such perfect prints!

I will be glad when this specific part of spring is done with and the flowers start to come up and I can let the dogs out without being ready for the mud tussle on their return!!

Oh, and I’m still battling the spring poop…. but I think it’s winning 🙁

Some days recovery is so much slower than I’d like…

So today I decided to start clearing up some of that dog poop. I got myself well prepared with rain boots, heavy-duty plastic waste bags and dozens on bags for picking it up.

It was gross!!

However, the weather was probably perfect for it as I could dig my fingers in the snow around the poop and pick it up often in one slushy piece.

I got all of the side area to the deck done and started on the garden itself.

However, what I didn’t take into account was how hard all that bending down would be physically. I managed about 10 minutes before I was too out of breath to ignore it any more. So I packed up for the day and came in.

Flashback to a repeat of what my life was like for months last year…. It took a good hour for me to recover my breath again. Even after that I couldn’t eat and breath at the same time for a few more hours.

I’m sure it was a combination of the type of exercise, the scents from being outside (though the poop itself hasn’t got to the point of smelling yet – it’s still too frozen) and just doing too much.

It was scary though!

So now,  I’m inside resting and working out how long it will take me to finish off the yard if I just do 5 minutes a day. At least my dogs don’t walk it in. Somehow they pick their way round it!

I’m also looking up different poop scoop devices to see if there’s something that might be easier for me to manage once I’m finished with what’s left in the snow and I’m dealing with the bog that is the majority of my yard currently. If anybody has any recommendations, please let me know!

My apologies for the gross subject matter but hey, this blog is about my life and this was my life today! Dog poop and extreme shortness of breath once more.

The good news is that I did recover and I can breathe again and eat, and talk (to my dogs anyway!). So I am improving but the space between how sick I was and how well I am is much closer than I thought 🙁

 

Why labels, and getting the right labels, are important for some disabled people

I’ve always wondered what life would have been like if I had been raised as Deaf rather than mainstreamed with occasional accommodations for my “hearing loss” that were often more an afterthought than an actual accommodation.

More recently, as I’ve struggled so much with my health getting the right label has been of the utmost importance. Without a label at all, everything was a great deal harder. “Breathing difficulties’ sounds so innocuous.

Unfortunately what seems to be the right label, that of Reactive Airways Dysfunction Syndrome (RADS) and Hypersensitivity seem to be very much misunderstood.

However, knowing that that is what’s wrong with me personally has allowed me to push myself in respiratory rehab. much more than I would have done before I knew for sure. Until we’d ruled out a lot of other possibilities I was always scared to do much of anything just in case I made anything worse.

Fighting to breathe for over 6 months before gaining any relief was hard enough. I wasn’t willing to do anything that could make that come back or get any worse. I was already past the point at which I should have been hospitalised months ago. Thankfully, I did get relief with the help of an outstanding speech language pathologist and the continued support of my medical team of specialists and my GP.

However, today I read the best description I’ve ever read on why, as a disabled person, being labelled matters to me.

Sparrows and Penguins

I don’t know if it’s true for all disabled people, but for some of we often do identify by our disability rather than as a person with a disability. I’m not a woman who happens to be deaf. I am a deaf woman. Being deaf permeates every aspect of my life. It is core to my identity.

So like “Candidly Autistic” I’m proud to be a penguin. I might be a different kind of penguin than “Candidly Autistic” but there is relief in no longer trying to be a sparrow.

I spoke a little too soon…..

While lung rehabilitation is certainly helping I was a little too optimistic two days ago on just how well I was doing. While I was able to shop much more effectively the downside was the amount of recovery time needed. I napped Saturday afternoon and thought that that would be enough to help me recover. In fact I played several games of scrabble with a friend that evening as I thought I was doing so well.

Then Sunday hit! I ran out of spoons!

It was like moving through treacle all day. I was exhausted. I’d obviously done too much too soon. So this week I need to step back a bit and remember that after 10 months of doing nothing, rehab two days a week and working one day a week is a BIG change and takes a lot of spoons. I need to make these my priority so that I can increase to working two days a week in three weeks time, as planned.

Lesson learned. Slow down and enjoy the recovery time. It took a long time to get this out of shape, it’s not going to get better overnight but I do seem to have turned the corner physically.

Now if only my respiratory system would decide to stop being so hypersensitive and allergic things really would be looking up!

However, I have been spending time researching options that might help me out there so more to follow soon as I get more information on whether the concepts will work for me or not.

In the mean time, as it’s the first day of Spring today, my lesson is to slow down and not try to recover all at once! Stop and smell the flowers as we start to see them appear as the snow hopefully melts for the last time !

Is everything possible or are there realistic limitations?

I participated in an interesting conversation today about whether or not everything really is possible, or if we would do better to accept our limitations. The original point being made is that while we tend to blame others for our own lack of growth, we tend to be the only thing standing in our way.

However, as a person with disabilities I wonder how realistic it is to say that everything is possible. When I mentioned this the Special Olympics were brought up as a model of how disabilities are not limitations, and how they inspire the non-disabled to push past the limitations they place on themselves. I’ve commented before on the issue of ‘inspiration porn‘ and how offensive that can be.

An example was then given of a recent video somebody had seen about a woman with cerebral palsy who was determined that she would walk. She was working with a personal trainer on her upper body strength to enable her to do so.

My issue with this example is that I’d like to know why she wanted to much to be able to walk. Was it her desire? Her intent? Or was she trying to fulfill the desires of others? The wish to be ‘normal’?

For many wheelchair users, a wheelchair becomes an extension of their body and represents freedom and independence. The only limitations being the physical ones of the built environment and thoughtlessness.

Dr. Stephen Hawking has been quoted as saying “Obviously, because of my disability, I need assistance. But I have always tried to overcome the limitations of my condition and lead as full a life as possible. I have traveled the world, from the Antarctic to zero gravity. (Pause.) Perhaps one day I will go into space.”

For somebody with his finances and reputation I suspect that it is much easier to overcome those limitations than it is for John Doe who also has ALS but lives on disability and is not well-known.

So is it fair to be hopeful that all things are possible or should we accept our limitations?

I’m not sure.

I think that if we truly believe that anything is possible that that’s when we do achieve the impossible. That we do place limitations on our selves that aren’t real or needed.

However, if I lived in the hope that all is possible would I deal with the reality of my today or would I always be living for “if” and “when”?

I think that ultimately I have to accept that today I have limitations. They may not be the same tomorrow or next year. There are things I may be able to do to change those limitations but realistically if I refuse to accept my current limitations I literally place my life at risk.

Somehow I have to find the balance between living with the hope that one day I won’t be as restricted and limited as I am now in what I can do due to allergies and hypersensitivity and also accepting those same limitations today.

Is everything possible? Yes, but maybe not today.