When I started out to change and redecorate the house I did so with the best of intentions. It’s important for me to remember this now as things are getting so very difficult, and at times stressful and heartbreaking.

It’s easy to want to give up.

I often think back to my career as a project manager and I have reflected on how much things have changed in such a relatively short period of time since I was a professional career woman. …Tradesmen and contractors have most certainly changed!

I always knew that it was going to be a case of planning, managing and imaging all that would be happening and yet still try to cope with a very difficult and unpredictable body, but I naively didn’t think it was going to be this difficult.

Thankfully we do still have a roof over our heads so there is nothing that can’t be postponed or rearranged when I am at my worst. We don’t have pressing deadlines to meet. Thank goodness!

Although I have found this period to be a highly creative time and even has an element of excitement about what the finished product will look and feel like, it has also been incredibly demanding and stressful.

Why? In one word. People.

I guess I was all too aware of how the caring professions had changed over the past decade but the changes in customer services, trades and supply have certainly changed so much too.

We have encountered the most unprofessional behaviors and mystifying attitudes that I have ever witnessed and as a result we have had to attempt to take on a lot more things ourselves. Things we didn’t imagine having to do.

I have to say that being placed back in the world of people again has been a strange experience. I have felt even more different, disconnected and removed from the outside world, which is a very unexpected result. Especially to this degree.

There appears to be no more customer focus, work ethic or motivation out there anymore. Sadly. Tradesman continually never turned up, not organized themselves, not consulted with us, not listened, not shown any respect or courtesy, but, always demanded payment up front and on time… It’s unexplainable.

There is this pervading sense of entitlement in almost every sector now. At this time it is like you must do everything to please everyone, regardless of the personal costs. It seems things have grown much worse out there, overnight.

Each day that we have had to deal with the most appalling standards of behavior I have also settled in each night to check social media only to read how the chronically ill should be more positive, more motivational and much less needy!

I am truly lost for words.

The irony is that those with less painful burdens and challenges are often the most self absorbed, self involved and entitled. But why?

I have been left with such a mixture of feelings from these experiences but I also know I have learned a lot too… I should say I am learning a lot.

A quick look around has shown me that those of us with chronic illness have nothing to be ashamed of and we do an amazing job at coping and rarely burden ourselves on others or take others for granted; certainly not as much as the average person out there does anyway.

We have nothing to apologize for and certainly don’t deserve the labels that many out there have imposed upon us.

A quick look around at the world at large has helped relieve me from this impression that we do work just as hard, if not harder, than the average person on the street, and I am prouder than ever of my chronically ill and Autoimmune brothers and sisters… More than words could say.

When the house is finished people may see the changes that have taken place, but they will never know the true cost and hardships encountered to make even the smallest of changes. The real hard work and suffering will only be visible to my husband and I, and it reminds me yet again of the ordeals those with illnesses go through to achieve anything in this life.

I am so proud of you all!

Gentle hugs,

Trish