In the past I have done Blog’s and at the time I was very angry at the world. It took 11 years to get a diagnosis and the help I needed. I was back and forth with hospital and GP appointments and not getting anywhere. Then I found a GP who understood and was willing to help. She is my knight(ess?) in shinning armour. I was referred to Physiotherapy, Occupational therapy, CBT, genetics and immunology. I was getting answers and on the right medication. The medication was very much trial and error and everyone is different. I am hoping that my experiences will help someone find a diagnosis quicker.
When I saw the geneticist, I was extremely apprehensive. Even at the age of 29 I wanted my mum with me and I am not afraid to admit it. My mum took the day off work to come to Addenbrookes in Cambridge with me for my appointment. I was elated to find that the appointment was an hour long, extremely thorough and ended up with the diagnosis I thought all along of EDS. Since then, I have received more help from the GP and hospital appointments have been worth going to as they now understand it is something and I’m not making it up. I was also told by one healthcare professional ‘No wonder your in pain!’ ….
Before all of this, I felt like I was talking to a brick wall. GP’s didn’t understand the level of pain I was in or the fatigue that came with the condition. I had blood test after blood test which did find extremely low vitamin D levels and a immunodeficiency disorder which I was then referred to the correct places and received the help I needed.
Now down the line, I have a more positive outlook on things. I have received a wheelchair from wheelchair services and also been to the Hypermobility Clinic in London and was also given a PoTs diagnosis. I was given some tips on how to help reduce the symptoms which I will go into more details in another post later on. I have also created a ‘management checklist’ which includes things like, heat packs, pain meds, TENS machine etc. I also use a lot of Stickman Communications items like the fridge magnets and wrist bands and communication cards.
Communication tools are very important when trying to help others better understand how your feeling. It’s difficult when you are constantly asked ‘are you better yet?’ when you know full well you won’t ever be over it. I use the wrist bands a lot depending on my day so I don’t have to keep repeating myself, I have a clear visual aid. Green days are my version of a ‘good day’. I’m never 100% but this does show that I can manage a lot on my own and I don’t need too much assistance. Amber days are those days where fatigue is kicking and and pain levels are having to be managed. I have to ask for help with tasks and start pacing myself better. Red days are those days where you feel like you have been hit by a tonne of bricks. Full recoup mode needed! Relaxation techniques, pacing, naps, heat, pain meds etc required. Those are they days where i’m always close to tears and very emotional.
With my experience, I hope to help others get the help they need in reading this Blog. Do you have any tips for pain management? What do you do on your ‘Red’ days? I would love to hear from you