Feeling alone By Katie

 

 

 

 

 

 

Feeling alone

 

 

At the weekend my health messed up a family fun day Saturday which made me rather sad and couldn't help but feel alone! 

When you have chronic illness you feel so alone. When I say alone I mean because I have no one in my family that suffers with a chronic illness similar to mine so it's genuinely hard to talk out loud about my health as they do not understand. Alone because most family birthdays meals I cannot attend because I'm either in a bad flare or can't eat anything on the menu so I'm left at home alone and I end up feeling so isolated. The one thing that really upsets me about missing family occasions is when I get certain family members saying that I'm choosing to not go out and that I don't want to socialise which couldn't be further from the truth. Of course I want to go out, attend all family meals or events and socialise but I've realised that you HAVE to put yourself and your health first. I've spent many times sitting in a restaurant putting on a totally different mask and acting fine when in reality I'm sitting there with stomach cramps, my joints are in crippling pain and my eyes are wanting to close from severe fatigue. The smile I put on in those situations is totally fake. How can I smile when I'm in so much pain. Sometimes putting on an mask and a fake smile doesn't  work in my favour! Unfortunately It makes some of my family members think that I am absolutely fine and that I am lying about being ill. It leaves me thinking what is the lesser of two evils? Grinning and bearing the family meal in crippling pain or putting myself first and not going and facing the criticism of some not so understanding family members.

 

The weekend just gone, I planned to go to Battersea Old Windsor Fun day on the Saturday with Beth, my nieces and my brother, we planned this ages ago and we was all looking forward to it. The evening before I got ready to have an early night then all of a sudden my colitis really flared up big time to the point where I was on the toilet from 10pm until 7.40am so I was incredibly exhausted from just running back and forward to the bathroom. At 8am I thought lets get an hours sleep so I can have some energy for the day out but soon as I closed my eyes, my bowel had other ideas meaning I had no other choice than to cancel the plans and stay in bed instead. I was so exhausted and the toilet trips continued till Saturday evening and I was home alone so I felt even worse and more alone. 

Luckily I have my three dogs who drive me mental but they follow me to the toilet, cuddle me on the sofa, always by my side in bed and make me laugh. I am so glad that I live with my Mother, something I thought at 24 years old that I wouldn't say but honestly I couldn't be without her. 

I really hope that my health starts to improve as I hate missing out on all these family events, I will be sure to keep you all update on my health and my story.

until next time

Katie x

Waiting For An Appointment//NHS Moans

Don't get me wrong I love the NHS and am soooo grateful for it and I honestly wouldn't survive without them but sometimes NHS makes me mad. Like right now!!

When I last saw my Consultant in the middle of August which I was given Steroids for two weeks then for a appointment with the Gastro team literally 2 weeks after to do some blood tests and other test to see if I need to carry on with Steroids or go down another route.. So two weeks came and I heard nothing. Now nearly 2 months on I have heard NOTHING and my Flare Up is getting worse. My GP did ring them up a month and they said they would ring me to give me a date to come in and still heard nothing so yesterday I went to my GP for a medication general update and I explained how my Flare Up is getting worse and how I haven't heard from Gastro ward yet and he was angry so he rang them as I was there and someone on the phone said my details are not on the system so my GP got the number for the specialist to ring in the afternoon. I hope I get a appointment soon as this is the worse flare up so far and the two treatments I've been giving for Colitis hasn't done anything to calm down the Flare Up so I feel very anxious and worried. Of course the fact that this Flare Up is extremely painful with cramping and constant stabbing like pains isn't nice to experience pretty much every second I am awake. Days spent curled up on the sofa dosed up with medication/painkillers with a hot water bottle and duvet might seem like a good day to some people but it has pretty much been my routine for the past year so no this isn't fun.

I just feel angry that I was told literally 2 weeks after I was meant to come and have tests as the consultant I saw was worried and concerned at how quickly my Colitis has got worse. Yet they are in no hurry to get me a appointment which is very important to me. For me to actually get better to get my life back to somehow abit more normal and a better routine. For me to not spend every day in a lot of pain and constant toilet trips. I know in England we are VERY lucky to have NHS and free healthcare and I never usually sit and moan about them and all of my operations have been done well and I will always be thankful to all of my Doctors ect but right now ARGHHH. P.S sorry for the moaning!!

Love Katie  xx