Make notes

Since the beginning of this year, I have made it my mission to document everything. I want to remember this journey as I think it’s important to make notes on what happened at the beginning of this year, and how it impacts on my daily life. For example: What is difficult? what happens when I do this? or that? Also, to include any new symptoms so that I can inform whichever specialist I am seeing. Furthermore, my intention is to provide them with what I regard as important information about my health, so that the doctor/specialist will start to piece it all together. Therefore, giving them insight that inturn will hopefully enable them to see the bigger picture. It has also really helped me to remember.

Appointments are a way off and I want to make sure I am ready to communicate how challenging this last year has been. I feel that it is vital to have the correct diagnosis, so that I can receive the right treatment to help me in the long term.

Spanner coming, sorry

However, (not to put a spanner in the works) it all depends on who you see! You could see a wonderful doctor/specialist that will ask you how you think things are going, and is more than happy to sit and listen to your concerns, but you may get someone who you have spent six months waiting to see, that has no time to listen to you, no empathy, or understanding and you end up closing the door behind you feeling upset and angry.

I have experienced this in the past, and it has been those moments that have spirred me on to make sure I advocate for myself in the best way possible! Someone once said to me – they are just like you (talking about a manager I once had) they have a label of manager, but they are no better than you. It’s just a title, don’t be intimidated. Say how you feel, tell them what you think. You are amazing, your feelings are valid. Doctors and specialists are no different, if they are not listening and shut you down when you try to talk to them, you are well within your right to rise up and ask to see someone else. However, you may be in for another long wait, but it may be worth it. I do know that some people do book private appointments with the specialist of their choice, and that may be an option for you. But, if you are waiting for an NHS appointment the waiting times at the moment are vast and it’s completely out of your control.

Unfortunatly, it’s a waiting game

I spoke to the Neurologists secretary (a lovely lady) this week to ask if my blood results were back from Guys Hospital in London.
The Neurologist sent off my blood to be tested for Hereditary Spastic Paraparesis (HSP) Her reply was, “I have called them, but unfortunately because of the back log you will not receive your results for six months!” All I could say was, “oh okay, thats that then, I’ll stop pestering you now” I joked. She laughed and reassured me that I could call anytime and that she would do her best to help. We then said goodbye.

I couldn’t help but feel despondent. It’s so hard to wait, it’s been almost a whole year! A year of pain, not being able to walk properly, on another level fatigue, dizziness and weakness. All of a sudden it all creeped up on me and I just sat there and sighed. It’s all up to me, I have to do this for myself, no one is going to swish a magic wand, there is no instant fix.

And then this…

I got a call, on the same day from a lovely lady from the health centre. My doctor had referred me to her last week. She was calling me to see how I was getting on. So, I began to fill her in best I could about the challenges I now face eight months after my hospital admissions. She asked me specifically how I was managing with everyday tasks, no one had asked me about these things before. With a heavy heart I told her that standing makes my legs hurt when trying to make dinner, standing in the shower was challenging, and how climbing my stairs was another great feat at times.

She simply said, “you need a perching stool so that you can sit level with the kitchen worktop, would you like one?”

“Really? You can get one of those for me?”

“Yes, and do you want something for the bathroom?”

I couldn’t believe it! I actually felt emotional! I had been trying so hard to do these things, not wanting to complain, just trying to get on the best I could, to feel like my old self. Now, someone was saying – no wonder you are struggling with these tasks, you need help!

She also offered therapies to help i.e a chair yoga group close to where I live, a gym specifically for people with neurological conditions and counselling should I want it. She said, “I will make a referral to Occupational Health, and someone will be in touch regarding a visit to see if you need anything else to help you around the house.”

I took a deep breath, if she had been sitting next to me I would have hugged her, this wonderful stranger who really had made my day. I thanked her profusely for her time and help. She organised another date and time to call me to see how things were going.

Social Prescriber

Her name is Debbie, she is a Social Prescriber and in just under hour she had validated my feelings, empathised and understood how challenging life had become, and then told me how she could help. I had never heard of a Social Prescriber before, and I wonder if any of you have? It could be a lifeline for many of you who need support, and resources to help you manage essential tasks around the house.

After the call I felt a lot lighter. I just need to hang on in there. I will keep you updated and let you know how the Occupational Health visit goes.

Sending much love as always

C x