Published on 12, July, 2020
I have a really had a tough day today. I see a neurologist as I have issues with my nervous system. I waited like 16 months for this appointment and hospital picked me up at like 8 am to take me and the journey took 2hrs 20 mins and I was finding it so difficult in the car. Arrived at the hospital to the floor and be told I had been taken to the wrong hospital. It was an error in the system it was neither our mistakes. I went back to get patient transport talking to my dad and I was now basically crying on the phone. I could be waiting over 1hrs 30 mins for another 2hrs 20 home with no appointment. My nerves were so bad and lost control uttering everything and I am moderate for sensory level 2. Basically I felt I needed to go on the floor and ground myself for proprioceptive feedback.
I couldn't do in the hospital. I needed the transport but I had to exit with my health and go on the train as I was couldn't wait. Now I cannot move my spine has gone.
My question is you have sensory issues and you need to ground yourself and your outside what you can you do, people were looking at me taking up three seats on the train lying down. Surely there has got to be some better way.
Thank you, my appointment is July 31st.
Hi everyone. I have just returned to this post to update today some information about grounding. I mentioned that I saw a sensory specialist in 2023. I had to shift through quite a lot of emails to string some information that we covered on grounding which I wanted to share with you. It can cover lying on the floor as well. Grounding work is called proprioceptive feedback. RO is the initials in my signature. Obviously some of these cannot be done outside, but they can be done when you get to a safer place.
RO was supported to engage with a brief mind/body breathing exercise. RO was observed to engage with the activity whilst sitting down and she reported liking the brief time when she felt the rise and fall of her chest. RO was encouraged to practice and advised of the benefits or repeated practice.
Strategies include using different body postures such as rolling body up with head to chest (foetal position), walking and using large arm movements.
Proprioceptive input can be calming, energising, and organizing.
Other ideas include sucking thick smoothie through a straw
What do the different sensory activities do?
Hand weights, you can use these whilst sitting and also in the exercise below;
Stand upright holding the weights above your head, slowly bend forward as far as you can with straining and then slowly raise the hands up and then lower to rest by your sides
Squidgy poppet & other handheld items
Blowing bubbles uses proprioception - Other ideas include sucking thick smoothie through a straw
Shutting eyes and practicing standing on either leg with eye closed – this helps with gravitational insecurity which is connected to your balance
Try completing these exercises in the morning to help achieve a grounding, calming effect. If you feel that you need them later in the day, do them again!
Important points: Slow, linear and rhythmical movements are calming, and fast, rotary and erratic movements are excitatory
Discussed coping mechanisms with what to do if she starts to feel overwhelmed.:
Stand up and put your feet firmly on the ground
Move about: stretch, stamp your feet, jump up and down, dance, run on the spot, rub your arms and legs, clap your hands, walk, remind yourself where you are right now.
Try to think about different things, almost like playing mental games, for example: count backwards in 7s from 100, think of 10 different animals, 10 blue things, one animal or country for each letter of the alphabet, say the alphabet slowly, say the alphabet backwards etc.
Carry a grounding object with you. Some people carry a stone or other small object, perhaps which has personal meaning, to comfort and touch when you need to
Ask yourself questions in order to bring yourself into the present. Write down your own questions, for example:
Sounds tough. Did you get any success when you eventually got to see the neurologist. 16 months is a long wait! The wait times are 11 months where I am.
what a rough one! I do also. I hug or rest on trees, smell flowers, get close to waves, get in the ocean, outdoors flat in the grass or in the sand.
This experience ended up with me being told in my GP surgery last Friday that I had a muscle spasm in my back. At least I found out it wasn't that serious seemingly. I was diagnosed co-codamol and diazepam. The pain I was going through was something else. I was basically letting out exasperated moans for two days. I am better now thank goodness. It has made me concerned a bit to say the least if it may happen again and it has put me of a bit going out to some places and doing some tasks at home. My appointment has been rescheduled for the end of July.
sorry about yours I am finding every day stressful at the moment I am fighting a horrible council order called a CPW it is a nightmare I am the victim yet I am now the offender weird world
I’m really sorry - that sounds dreadful and so stressful for you. I’ve had a dreadful day too - so I sympathise. Hopefully we will both have a better day tomorrow.
you must I warn you though you will have very barrier put up just stick with it as you have been treated appallingly .I think they should arrange either for more local treatment even if the NHS pays for you to go to a private hospital or they should, transport you in comfort and maybe pay for you to stay in a hotel.
I get so angry when I hear things like this please do not give up
Thank you, I will push forward with a complaint.
I don't know what to say you have been treated appallingly I am so sorry you must put in a complaint and lessons must be learnt