Frustration

First of all, I would like to apologise to those who check my blog regularly and have found there to be no new posts! I have been quite unwell over the past two weeks, but also quite busy and my blog has fallen to neglect! However, I am back now.

I feel as though frustration is a good title for this post as it is an emotion that is with me quite often. It’s an odd one.. It feels very strange to be frustrated. It’s like a combination of anger, despair, defeat, longing, disappointment and sadness all in one. You tend to feel like you are letting yourself down which can make you quite angry and sad, and you feel defeated and disappointed that self-improvement is not in your control. You can start to despair when your efforts are fruitless and then long for the day when you can finally start to feel and do better.

That’s how it feels for me anyway.

There are several things in my life that I feel frustrated about and they all stem from being ill. In itself it is frustrating because nothing seems to be making me feel any better. I have been vomiting for 2 weeks straight now, with on and off days for a few weeks prior to that. I had a gastric emptying study on Feb 15th which I am 99% sure showed I have gastroparesis, and yet the gastro team at my hospital have still not done anything! I have called twice now, finally getting somewhere (I thought) when the secretary put my results in the Dr’s tray and told me he would write or call. That was 5 days ago and still nothing. It has been almost 2 weeks since the examination and having lived with this awful vomiting for 2 and a half years now I NEED some answers!! (and medicine preferably!)

The above and also managing my CVID is something else that causes consequent frustration as it means I miss out on a lot of things – primarily my education! I frequently am too unwell to attend school which is so frustrating as I am doing my A levels and have aspirations to study Economics at Cambridge. At the moment we are discussing when is best for me to sit my maths As exams and how I can get extra support from the hospital for when I am absent for long periods of time (which is quite frequent). Due to the unpredictable nature of both of my health problems, I feel like I’m being so uncooperative when I say I’m not sure what is best or perhaps disagree with what they think is best, such as taking some of my maths I should take this year, next year. I’m not particularly keen on that idea as next year I will also have Economics and History as well as more maths anyway, and who’s to say I’m going to feel any better in myself next year anyway?

It is difficult to plan ahead when your health is so volatile and never know what could make you have an episode of vomiting or if you will catch an infection etc. Even planning three weekends ahead is difficult, let alone predicting how I will feel next year! It is impossible and so so frustrating!

Just a thought…

Having an immunodeficiency disorder and being in a support network with other people who have the same condition is a bit like living on a road full of period houses; lets say Victorian in style.

Imagine:

They are immaculately painted on the outside with reasonably well kept plant pots by the front entrance that only get a bit weary if the person goes on holiday. From the outside, they all look impressive and fine (in both senses), but inside there are problems with old pipes starting to leak, floorboards that are showing signs of rotting, a couple of cracks in the ceiling and ever-so-slight subsidence. 

However, the thing that makes it easier for each resident is that there’s a whole road of these houses that have the same/similar problems inside! That means each person can reassure you it’s not just you experiencing boiler issues and frequent power cuts because of outdated electric wiring and plumbing systems.. but most likely several other people have those issues too. And out of those people, it’s almost guaranteed at least one will have relevant details about a local handy men who can provide assistance!

Now think of it like this…

People with PIDs are a bit like this road of period houses. Pretty well maintained generally, unless we are feeling particularly rubbish (on vacation). How we look on the outside is often not a true representation of how we feel on the inside. Despite looking okay, we may perhaps not be fairing so well internally – whether physically or mentally – and be in need of some support from our ‘neighbours’ to sort out our problems, whatever they may be. 

The idea that each resident can help point the others in the direction of somebody who helped replace a radiator, or re-did their floors etc, is the same principle as being in any kind of support group. It enables you to learn from other people facing the same struggles so that you have an idea of what you’re up against and how best to go about sorting/managing the problems it creates for you. 

In both circumstances;

               the help and support is invaluable to each individual, and the common struggle unites them as a single body full of knowledge and experience in dealing with a multitude of challenges. 
Let me know what you think about this simile for what it’s like to have a PID and/or be in a support group; share your own if you have one!  

Quick Update

Hello everybody, little update as haven’t really uploaded anything this week but I’ve been very busy behind the scenes!

I’ve finally got all the information I need about the PIP benefit application and plan to start the application process soon. I have also been researching a university grant for people with disabilities. (All UK only as far as I know). 

Many people are not aware that the broad spectrum of PIDs are actually classified as a disability under the Disabled Act (in the UK), and therefore you can get help accordingly to cope with day to day struggles! It’s a very depressing process trying to mentally put yourself in the position of how you feel on your worst days and trying to note down how hard things are for you to undertake at those times, such as showering or getting dressed. However it’s also hopeful as at the end you may finally end up with a reward that can help improve your quality of life somewhat! 

If you need any information or questions, please email me at: liveyourselfbetter@gmail.com

I have felt rather unwell this week; but on my better days I have been busy busy. Yesterday I had a solid half day at school of back to back lessons, then rushed home in time for my driving lesson which was TWO HOURS! It was my third lesson and my instructor took me on the dual carriageway.. I went up to gear 5 and was driving 50mph. Crazy! Very fun though. It’s so empowering to actually feel like you’re accomplishing something, as recently I’ve felt rather unconfident in my abilities (or rather inabilities) to focus and concentrate for a sustained period on things such as my studies or reading a book etc. It’s been a challenge but I’m enjoying driving so much!

I then had 2 hours of maths tutoring to help me catch up in prep for mocks next week (but also for my As maths exams this year as they are my only unreformed subjects). By the time I had dinner it was 9pm and I was completely exhausted! 

The relief that it is infusion day today is just unmeasurable! I hate doing them, but I’ve felt so dreadful for the past 5 days that I was almost tempted to bring it forward! Does everybody else get that? It must be pretty common to feel the lull before your infusion. 

Also, fun fact of the week;

The combined gratitude but also frustration when somebody tells you how well you are looking when in fact you often feel like you’ve just about scraped through surviving WW3 you’ve been so I’ll is because … *drum roll please*

… It is not actually the infection/illness that makes you look ill, it’s the action of the immune system! PID = no immune system function = looking peachy when really we just want to curl up in a ball and hibernate for 200 years! Mad, huh?!

Have a lovely weekend, and pop back on Sunday to have a read of this week’s Super-Sunday Post! 

Lack of a 2nd weekday post..

I’m literally so exhausted having actually attended a fair few lessons this week.. I had planned to write a medical blog post yesterday, but after my infusion and then my maths tutor I really just didn’t have the brain capacity! I’m still on antibiotics and the side effects of my subcut infusion leave me drained. 

I have been up since 6:30am today (haven’t seen that hour in a long time!), had my first full day back at school since Christmas break, and have been babysitting since 6pm for hyperactive 2 and 8 year olds. They’re finally in bed now but to be honest after 3 stories I’m ready to go to sleep, I don’t know about anything else!

Hopefully their parents come back soon so I can get into bed myself. I have my home care infusion pack being delivered tomorrow, and also my first driving lesson! I’m so excited!!

I hope you all have a lovely (restful) weekend 🙂