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.

Friday, 6 July 2018

Dear any doctor who advocates pain acceptance,

I write this so that even if you don't know my case or me as a patient, you will understand what chronic pain means for a person. It is likely that someone asked for your help today to overcome something that they're struggling with. It is also likely that help was denied because maybe you didn't want to add to what they consider to be the "Opitate Crisis" or you thought they were just looking for something to get high on. Although there are many people who are just after a drug fix, here's the truth. That is only a minority of people who ask for help for pain management.

The thing is, I, like so many others, have a number of health problems that are painful. Have you ever woke up and had to force yourself to move because you slept so badly and everything is hurting? Have you ever tried to stand up, only to have shooting pains from your neck to your hip? How about breathing? Does the expansion of your rib cage feel like it's so painful that you only take shallow breaths? These are just some examples of things someone like me experiences on a day to day basis! Now, my pain isn't the worst pain out there, it's not a contest though, remember that, but it does have a negative impact in my day to day life.

Now imagine you're trying to ask someone for help after the 5th night of not sleeping for more than a short period. You're exhausted. You just want it to stop now and for a reprieve from all this. You aren't asking to be doped up to the eyeballs, you just want the same as everyone else wants and should be entitled to, to live without constant pain and to function somewhat normally, or as normal as things are when you have an illness. That person says "No" to your request, saying something patronising usually about how pain is something you should just ignore or try and live with! Even if it does make you feel like jumping off a bridge in to oncoming traffic. Being told that despite your suffering, you aren't going to have someone help you, no matter how much you cry and you should just accept that. "Drink water and sleep..." "We can't give you pain meds because we don't want you getting addicted..." "Be more positive." And finally "There isn't anything we can do", the most soul destroying phrase you can hear.

I have experience of pain acceptance first hand and it wasn't good. It made me feel like there wasn't any point in trying anymore and if it hadn't been for people who love me, I would have become another statistic. Another life taken because they honestly made me believe that I had no other choice. Its true that pain medication doesn't cure what causes the problem but when you're problems are pretty permanent, it makes it less daunting.

No one wants to be stuck on powerful drugs to function.

No one asks for this.

No one should be denied help.

So, please, try and empathise with the next person who tells you their suffering and need you to help them. Please try and look beyond the media creation of a crisis that isn't really the way it's been portrayed. Yes there are places where the prescription of opiates isn't appropriate but try and look at each case individually. Empathise. Think about how you would feel in their situation.

Please hear my humble words and help people who need it. Advocating pain acceptance is only compounding the problem and isolating those who need their medicines to live without constant pain. The result of this could be that that person decides that the pain is too much and they can't live that way anymore. It does happen that people think that it's better to end their lives than suffer.

Wendy xx


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