Monday, 6 May 2019

One Second Every Day - May Week 1

Wednesday 1st May

Hectic day compared, but not as bad as yesterday (I had two appts; one at he hospital - Dietician so had patient transport to weight for) so I was hoping a for a day in today to rest especially as I've got another appt tomorrow, but nope I had an appt at 12.30pm and then spent around 50 minutes for my taxi and I didn't want to use any other taxi company and I know most of the drivers with this company.
Home finally and I got something to eat and had a much needed rest.
Dad being a teacher often leaves me with the laborious tasks like laminating and paper trimming so I did that.
Feeling a bit panicked as I haven't done any college work for a few days but I was speeding ahead so I hoping that's bought me some time. I just haven't had the energy, motivation or on some days time.
My pain has been quite bad this evening to to point where I was on the verge of tears.

I'd posted my blog post about HSD and how correct diagnosis of hEDS/HSD matters. It's one of my most riskiest posts as I try and remain quite neutral but I felt what I had to say needed to be said. 

There was someone I recently spoke to on social media who was convinced they had hEDS and they wanted to get that diagnosis from their local rheumatologist and they told me that when they was going to appt they was going to take info about hEDS to them to aid their case. Now yes that person may well have hEDS but I don't believe that rheumatologist should have give the diagnosis, they may not be up-to-date with new current information on hEDS and the new classification criteria and how to use the diagnostic checklist. 
Many people are hypermobile but don't have EDS or HSD but they could easily go to their GP or local non-specialist rheumatologist and say "this joint and that joint are hypermobile and I have this symptom - I think I have hEDS?" and the GP/rheumatologist agrees with them because they're soup-to-speed or they've not even used the classification checklist ext. Especially as there's no genetic test for hEDS yet so they can't even do that to ensure correct diagnosis, it's all based on words and a physical exam. But many people can be hypermobile and not have hEDS or HSD; just look at dancers, gymnasts or athletes.

What feel frustrating to me is that I went about getting my diagnosis seeing a top EDS/HSD rheumatologist in London and I was so close to getting a hEDS diagnosis but all I was missing g was hernias and prolapses. They are the only two symptoms I didn't have on the diagnostic checklist. And around the time I was diagnosed the new classification criteria came in so if I'd been seen just a few months earlier I probably could have easy gotten the diagnosis of EDS Type 3 (hypermobility type) so it felt a little bitter-sweet especially as many people see HSD as a lesser illness - it's different, but not less. The treatment for HSD is the same as hEDS, but still, correct diagnosis is vital I believe. And often, even by people with EDS they've made me feel less because I have HSD which "doesn't;t matter, it's not like you have EDS". I have so many complications and problems because of my HSD including PoTS, dysautonomia, intestinal dysmotility and other gastro issues, chronic pain and fatigue, multiple dislocations and subluxations a week, sometimes in a day and more.

A link to the post can be found ⇨ here.

Thursday 2nd May

Had Bluebird this morning with my favourite carer. We went to Tesco to pick a few bits up and then we had some time spare so my carer suggested we go to Pets At Home to look at the animals and I picked some bits up for Flop. It was really nice to get out the house I have been out for a while.
Then I came home and got something to eat and had a rest and tidied my bedroom and then I headed back out to Orchard Barn. I had a massage and she noticed that my back and shoulders where less knotted so the acupuncture must be doing some good and I noticed that my muscles seemed less knotted too. I then saw Dr Sally and I spoke with her about the infection I've had the past couple of weeks and she's going to make some medicine up for me to clear my chest up and she gave me some probiotics to take to help me also. I want to try and avoid as much as possible antibiotics as over the years I've been on them so much it's done more harm than good in the long run and it just weakens my already bad immune system.
I got home and had a rest and then did a bit of college work before tea and then after tea Dad, Mandy and I watched a documentary on climate change and now I'm heading to bed.
I didn't get as much college work done as I hoped to have done an I have done as much since feeling yuck with this infection but I've got tomorrow and the weekend totally free so hopefully I can get as much done as possible to catch-up. At least it's something I'm enjoying studying.
Now to get ready for bed.

Friday 3rd May

Had a lay-in this morning to try and recover from three busy days in a row. Woke up feeling okay-ish and did my usual routine and watched TV.
By mid afternoon I decided I had go upstairs and do some college work. I managed to finish of typing up the answers to the questions I started the other evening but my brain and body was struggling more and more and I had to give in and have a sleep.
2 hrs later I've woke up feeling even worse than before my nap and all I want to do is sleep but I feel even too tired to do that and I've verging in tears. I think this is PEM setting in and I'm just hating M.E. right now. I need to try and get more college work read but it's slow going page-by-page. I have contemplated having a bath but I don't want to waste precious energy and end up possibly feeling even more awful, though right now I'm not sure if I can feel any worse and what I can do feel even the finest bit better and I'm struggling to type this as my brain is just going round in circles.
Shortly after typing this I went downstairs and not long after laying on the sofa I had a seizure episode which went on a while so I'm feeling even more foggy and tired so I'm now upstairs and I'm going to settle for an early night.

Saturday 4th May

Had quite a difficult day, especially with fatigue and I've still got this cold and chesty cough and I've felt so cold today. I've had to have lots of mini power naps just to get through the day. I perked by late afternoon/early evening and managed to get a bit of college work done but today has mostly been a sofa and bed day. (Well, the vast majority of days are that to be honest!)

Sunday 5th May

It took me quite a while to get out of bed from my alarm going off this morning and  as I got downstairs and sorted out my meds for the day I was feeling a bit off kilter so I decided to not got to church and just rest.
I did get dressed and I've spent most of the day laid on the sofa but I did spend some time in my room finishing off one letter and writing another. I then got tired and I was too tired to tidy up so that's a mess to clear up. I then retreated back to the sofa curled up with my heat pad as it's quite chilly today.
I've just spent some time in the sun room (I try, if I can to change rooms to get a variety of environments) doing a bit of college work which again has tired me out and my brain has now fogged up so I'm just going to rest on the sofa.
Pacing requires activity → rest → activity → rest and so on until bedtime.
If I have some energy this evening I may either do the 2 questions on my college work, write another letter and/or tidy my bedroom but tidying my room before bed is my priority.

Video description:

Wednesday: Mist coming out of an aromatherapy diffuser
Thursday: View out of a moving car window
Friday: Opening a book entitled 'Chronic Fatigue Syndrome and Myalgic Encephalitis
Saturday: View out a window with raindrops falling down the glass 
Sunday: Putting a bus 2nd class stamp onto an envelope