17/07/2017

10 Tips for coping while in the waiting room




Have you ever sat in a waiting room whether in a hospital or Dr's surgery and started to feel anxious or maybe even stressed? I expect you are nodding to this! I have on many occasions, especially when kept waiting to see a Dr/Specialist for what seems like hours, you start to feel frustrated, angry and need to vent your anger out usually at the staff behind the desk.
Everyone is different when coping with their feelings, some will pace up and down, other's make grunting sounds and then there are those who will get very angry and start losing their temper. can you relate to any of these? I get very frustrated at times and also anxious while I am waiting but never taken it out on the staff, usually the person I am with.

How do you cope with these feelings while sitting in the waiting room?

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26/06/2017

Find out about my experience on a reablement unit with a chronic condition




On 11th May, following a long stay in a London Hospital I went to a Reablement unit in my local area as I was not fit enough to go straight home and was very weak and deconditioned. I was taken by ambulance to the unit, on arrival I was greeted by a lovely assistant who showed me to my room and settled me in. The ambulance guys carried my luggage, consisting of lots of bottles of water, syringes, feed etc it looked like I was moving in and taking over the place. I just wanted to lie on the bed as I was in pain feeling nauseous and exhausted after the journey. I had my obs taken and my photo as this was needed for my medication chart, I certainly wasn't looking my best, then was left to recover. I met the Sister in the evening who was very nice.
One of the first things I noticed was how peaceful it was compared to being in a big hospital, you could here the birds outside the window instead of helicopters and sirens. My room overlooked the back rather than the front but it was so nice to be in the country.
The unit has 12 bedrooms that are nurse and therapist led, all working together to ensure that each patient receives the care and therapy to achieve their goals. The aim is to support patients in managing their own health conditions, restoring functionality, improving wellbeing and supporting self-care. All patients are assessed individually before coming and need to be medically stable as it is not an acute facility.   
The following day, my physio turned up in the morning which was a pleasant surprise with a very nice young man who I was told will be my physio for the stay, it was nice to see her again as it had been a long time. She wanted to see how strong my legs were from when she saw me last and they were both amazed how hypermobile they were, she needed to work out an exercise programme he could do with me, then she got me sitting with legs over side of the bed and activate core muscles to sit up straight, she had to help me to stand as I was so weak and then used my cushions and pillows to get me in a suitable resting position for my muscles to recover. She explained it will be hard work that is the purpose of coming on the unit, to achieve your goals, she stayed for a bit then left me with the young man who wanted to ask me a number of questions.

This was my exercise programme set by my physio:

Bed exercises:
  • flex foot, bring knee up towards opposite hip. Creating a 90 degree knee and hip flexion and slight adduction of hip. Push leg back to extension in hip and knee and slight hip abduction, power through the heel.
  • Guide the movement
  • Assist in the flexion phase and extension phase.
  • Core activation pull bellybutton towards back and hold tension
  • Elbow flexion with activation of shoulderblades
Sitting exercises:
  • sit up swing legs over side of bed onto side push up using elbow. Sit with slight support
  • Straighten up, activate core muscles. Rest arms on table and move objects on the table creating a twisting of core while maintaining posture.
  • Stand up with a raised bed and slight support behind back, practice mini squats
Do exercises twice daily 3 reps 3 sets
After exercise:
Get into resting position with support of pillows 
note: Daily form can vary, check on status before and after exercise


I went in the hydro pool in the afternoon, I had been looking forward to this as it had been a long time since I last went in. One of the assistants got me ready and made sure my PEG-J site was sealed up with waterproof covering and a porter came to take me down to the pool. I was only in the water a short time before I felt potsy and had to be hoisted out and taken back to my room to recover. I think I was expecting too much after not being in there for months.
Over the weekend I received physio twice Saturday and once Sunday. Through the week it was twice daily if I didn't have hydro. The staff agreed that I needed to use a tilted wheelchair due to my PoTS and an OT gave me one to try out, she made the necessary adjustments to make it smaller as it was huge. I was encouraged to sit in the chair for a short time twice daily to help with my strength, this was part of my goals but due to pain flares I was not able to as much as I/they would have liked, this is the nature of having a chronic condition. 

Throughout my stay on the unit I had to make sure I paced well, this was encouraged all the time and I had my own timetable for the week so I could put rest periods in after activity.
The nurses encouraged me to become independent taking my medication as this was something I had not been used to. They made sure I could access them easily by moving the cabinet closer to me and would check I had taken them. They also encouraged me to take more control over flushes after my feed and throughout the day for hydration, I needed reminding about this due to brain fog at times, they still helped connect the feed at night as this was difficult for me physically and made sure I had syringes to hand. Due to my fatigue and pain it is not always easy for me doing these things and I require help at times. 
I managed to go in the garden with my physio and OT on a couple of occasions, in the tilted wheelchair for a short time before I got uncomfortable and needed to go back and lye down, I was pleased I did this as the gardens are stunning.
Reablement unit beautiful gardens












I also managed to attend an arts and crafts class twice, which is something I am passionate about and didn't want to miss out on, they had a set project to work on, so you all do the same thing, the first session was decopague, which is basically making a picture up with lots of different layers giving a 3D effect. I made a teddy as there were not too many parts to stick together, my physio helped with the sticking due to pain in my wrists. The second session we made footsteps using photos, backgrounds and words, telling a story, however I suffered afterwards due to not pacing properly as I was engrossed in what I was doing. I had a volunteer helping me a lot but it was the sitting that was the main problem. This is the difficulty having a chronic condition the unpredictability of flare up's from one day to the next.


The decision was made by the team to reduce my hydrotherapy sessions as I was having many flare ups lasting for a few days, meaning I was unable to fully engage in my physio sessions which were very important to help me get back on my feet. They wanted me to practice trying to transfer more as this was a goal and something I was struggling with and needed to be able to achieve. They used different types of equipment to help me, I tried the following:
  • Gutter frame - like a zimmer frame but has four wheels and you place your arms on it. I found this too difficult as it put too much stress on my joints and especially my shoulder.
  • Special rollator -  which again I needed a lot of help with to stand up and get my balance, it used my arms too much
  • Banana board - needed two people holding me up as I could easily flop forward and took so much energy moving a short distance on it. 
  • Stand up hoist - The ones I tried are called Sara Steady, one needed to use the legs a bit to stand which was hard going and the other less so and lifted me up but under my arms which was not ideal for my shoulder. 
  • Handling belt - The problem with this is you have to be able to weightbear it is just used for aiding someone, I needed two holding me with this and was not able to weightbear enough for this to really work properly and at times was being pulled by it when I lost my balance
  • Minstrel - Hoist so you are put in a sling and are lifted completely you don't need to be able to weightbear, not that comfortable and can take a bit of time when transfering .
Have you used any of these and what did you find the most suitable?

What I benefitted from being on the Reablement unit

  • Independence managing my medication, this was something that was done for me in hospital
  • Confidence in using syringes for my flushes, had very limited experience of this before I came here 
  • Receiving regular physio and hydro sessions
  • Input from an OT and being able to try out different equipment/Aids
  • Opportunity to attend an arts and crafts class
  • Encouragement to sit out in my chair 2xday
  • Practice mindfullness regularly 
  • Activity Timetable to make sure I paced properly and got enough rest breaks 
  • Encouragement to take care of myself, it is so easy to neglect this due to pain and fatigue. The assistants offered me a wash every day 
  • The opportunity to talk to people, chaplains would come to your room and ask if you were happy for them to come and have a chat, which was nice as it can be isolating stuck in a room all day. 
Have you been on a unit like this? please share your experience
  
   
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