We are all raised to believe that “… it is always darkest before the light…” and  “…that storms of life pass…”  They are lovely positive things that we like to hear at just the right moments in our lives, but sadly they are not always true.

In some cases, especially medical cases, it can get darker from here, and the storms may not pass but grow ever more stronger… These are not the scenarios that we like to hear and they are very, very hard to accept when they actually happen. I truly wish I wasn’t sitting here writing this but I am.

So…What do we do? What can we do?

Well, one answer, is that we can learn to accept these facts about some health issues and diagnosis. All the positivity in the world may not actually improve some illnesses, and some illnesses can in fact worsen and progress. Many of you out there will not like me writing about these things, but I am writing about it because it is my reality and I so I am talking about things very close to home and the things I am going through. If you prefer not to read this and skip over this piece I will completely understand and will not be offended. For those of you that choose to read on you will get my honesty and more of my sincerity.

This year has seen my symptoms and relapses worsen, and as much as I would dearly like it not to be true, it is. I have tried new drugs and ‘failed them’. I have been suffering terrible side effects and they have been almost as unbearable as the diseases themselves. In short I am completely drained. Many of you reading this will probably be nodding your heads in empathy right now but I have always wanted to ‘try’ everything I can and leave no stone unturned. But this is one of the features of my nature, and one of the factors I take comfort in when I look back at what I have done to try and help my situation.

I have always been as positive as I can be and so I have been tirelessly working to advocate for others and connect with other sufferers around the world. It didn’t help make my illness go away or stop my illnesses getting worse but it has certainly helped knowing that there is a greater community out there of understanding and experience.

I will admit that there is a large part of me that feels that this is extremely unfair, and I accept that life is unfair and does not discriminate. I realised that there are many people out there that feel like life is extremely unfair when their health fades or worsens. This is a completely normal reaction too. I know I have to ‘feel’ this to get to the other side of it. So I am going to give myself permission to be disappointed, sad, angry, frustrated and to mourn. Each new step or progression is a new mourning period and a new ‘normal’; and it takes time to process.

After all this time I know that these diseases are unpredictable, unfair, mysterious and painful. But sometimes even sufferers (especially sufferers) can forget how truly unpredictable, unfair and painful they can be. I began to forget, but this year has been a very, very painful reminder.

What have I been doing about it? Well I have thrown myself into blogging and connecting with others, as I need others who understand what I am going through, now more than ever, because meeting others and sharing with them reminds me that this is not my fault. I need constant reminders that it is not my fault.

Connecting with others reminds me that sadness, fear, frustration and anger is normal too. So that’s what I have been doing. Reaching out into the darkness. It has helped. It keeps helping. And every little bit of help is important now.

I also have been doing my share of mourning and ‘feeling my way through it’. I personally find it helpful to let some of the weight of these feelings out from time to time. I think its completely understandable given the circumstances and my husband certainly understands it when I do. A good cry here and a good vent there… It is healthy. While I am not in a position to go for a good walk or an endorphin fueled run, I have to take comfort in having a good cry or vent now and then. The occasional bit of retail therapy doesn’t hurt either! – Lets just say that Amazon/Ebay sales have improved this year!

Finding my new normal has not been easy but I realise that in order to accept the changes I will need to know what the new landscape looks like. Sometimes this takes time. It is taking time. At the moment time is what I have. It is my 24/7 job and all my time must be devoted to understanding what I can and can’t do now. What works and what doesn’t. What will help and what wont. I have to do this for my own understanding and so that I can then explain to others in my life what they can expect from me.

With each stage or worsening in an illness it can mean that we have lost something or we have to give something up. This is some of the the hardest parts. Perhaps we lose our jobs, perhaps we lose a relationship, or perhaps we have lost a physical ability, whatever the change brings, there is the sad realities that each loss can bring which is very much part of the mourning process. This year has meant that I have even less control over my physical abilities and this in turns means I have even less ability to be in peoples lives in a physical way. I haven’t been able to spend time with friends and loved ones and I haven’t been able do social things that most people do. My ‘physical’ changes has meant that I am even more isolated and cut off from the rest of the world, so I must take stock of those that are still here and the ways that I can interact; and so I am so thankful for my husband, my fur kids, my internet friends and late night ‘chatrooms’. This might be the only way I can ‘be’ in peoples lives now, but that is all part of understanding the changes and accepting them.

It takes time. Its not easy. It isn’t fair… But I am not alone.

When you constantly have to keep counting the little things in life, you become more and more grateful of each little thing you still have. It can get darker from here… but I hope that no matter how dark it gets I will never have to be completely alone in the darkness and that is what I keep holding on to when the lights go out.

Gentle hugs,

Trish