So the last time I left you, I was saying that the Occupational therapist was coming with a chair for me to help my mobility. Wow… a lot has happened since then!
On Friday the 13th (Poignant date, I might add!) the Occupational Therapist came to the house as planned, brought the lightest wheelchair she could get me through the HSE and assessed our home.
Firstly the chair. It’s not the sexiest in the world, an Invacare chair, but it is light enough, fold able and the wheels can be removed. It is also blue… and has taken some getting used to! That, and it badly needs to be pimped because it looks like ass!
it has helped me move around the house and get out which has been wonderful, but there are still restrictions and its not light enough for my shoulders and elbows not to notice the new load on them by self propelling. So a motorized chair has been mentioned and is being pursued to save my remaining ‘good’ joints going forward. Even though I would like to self propel for as long as I can to keep me somewhat fit, I seriously do have to consider the Motorised one for the sake of my remaining few joints!!
While the OT was in the house she assessed it for size and accessibility. She mentioned lots of options going forward, like maybe a stairlift to help getting up and down from upstairs. Some other options, of which I feel may be excessive but may be needed in the future, like, extending the house or altering the house for further accessibility is something we need to look into and think about.
The OT left us with plenty of food for thought and I guess the better half and I thought once the chair was in the house I would somehow magically return to living a normal life.
Of course that didnt happen and it was beyond hard. The weekend of the 14th & 15th of September was very tough for us. A lot to take in. A lot of changes to make and to think about. The chair was a big help in my mobility, but emotionally, we had some things to get used to, weather we liked it or not.
Thankfully, we are not ones to wallow, though it was difficult not to at the start. We picked ourselves up and started to look at what our options were going forward and how things could be so much worse.
While in the process of filling out forms and getting this new lifestyle organised, I had to sort out doctors appointments and think about getting treatment underway. I was determined to recover my walk at least but as I am being covered pubically, I knew it would be slow progress.
That Monday I decided to ring the rheumatologist secretary in the hospital to see if that ‘urgent’ letter that the doctor wrote, had any impact on getting me an appointment. The secretary said that ‘He’ had seen it and sent it onto Croom Hospital, So I rang there.
Once I got through and explained my situation, the secretary looked into it for me and said that I had been moved back onto the ‘routine’ list and as a result my appointment would take a long time to come through.
Needless to say, I flipped!
I effectively broke down on the phone and started to cry at this poor unfortunate stranger at the other end, who had no control over this but I wasnt going to let the opportunity pass to get my voice heard.
“What…? *sob, How…? How can I be routine? I am in a wheelchair and my husband is minding me 24/7, and the urgent letter, *Sob, how can I be routine?!!!”
…I apologized profusely for my outburst and explained that I understood she had no control over the situation but how could I be routine?
I sobbed some more and she sounded more than flustered at the other end and promised to talk to the specialist, to look into it for me further and that she would call me back.
The next day, Tuesday, she did call me back and said that I going to be seen by the Musculoskeletal team and that an appointment would be sent promptly.
The following Wednesday, we decided to go and update the doctor and see about some sort of pain management as my hips were progressively getting more painful.
While there, he expressed anger at how I had been referred to the routine list once again, even though he wrote an urgent letter. He also advised me to go into hospital to see why the hips were getting so painful and to see if anything could be done while we were waiting for treatment.
Long story short. The next day, I had an appointment at the medical assessment unit and ended up being admitted after a lovely doctor, who showed genuine interest in my condition, felt that if I were admitted, my treatment would be faster than outpatient treatment. So I agreed to give it a go and somehow was given a private room, nice.
Even longer story short, I ended up staying 11 days in there, progressively getting worse!
The first morning after admission, I was met by my usual pots team of doctors, all promising to consolidate all the diagnostics and all the separate doctors and finally have a treatment plan going forward. Blood tests and xrays were done and everything looked as though it would progress fast and efficiently.
That didnt last very long.
Over the course of my 11 day stay, I was moved from the private room, I think I had it all of 2 days, to a public ward, doctors and specialist visits became fewer and even more brief and my pain management increased as my pain did from lying mostly motionless on that hospital bed.
During the time I was in hospital, I was seen by my usual Pots team, A physio therapist, A specialist from the pain management team as my pain kept increasing. A rheumatologist who saw me in a matter of about 3 minutes in total, to me, said he did not disagree with my diagnosis of EDS by the specialist in Cork but to the other teams he said he thought I didnt have EDS Type 3 but thought instead that I had: ‘Benign Hypermobility Syndrome’ and not EDS. Which in turn caused a flurry of confusion on all counts!
If you dont know the significance of this statement, let me enlighten you with a lay explanation…
That is like saying, I dont think you have cancer, I think you have… cancer! EDS and BHMS are the exact same thing and the difference in understanding is in the medical terminology that has advanced over the last few years where Benign hypermobility Syndrome is considered EDS or a type of EDS.
Either way, I voiced my concerns and I got seen further by the Physio team and on the last day, someone from the Neurology team.
On discharge and on the discharge letter, they agreed that I had EDS and POTS and would require detailed physio, Occupational therapy and pain management going forward.
So where I stand, They advised me to go back to the specialist in Cork to get a detailed outline of the treatment he recommends for me and to refer me to get a genetics test to rule out overlaps of other, more troublesome types of EDS. I was also advised to stop working as it is not feasible for the moment in my current condition. This hurt a lot to take on board as I had just started the job in June and it was Ideal for my situation, at the time, I hadnt accounted for a change of this size!
Next Monday I return to the rheumatologist specialist in Cork and the following Monday I start my Physio. That’s where I am at this moment in time, ill keep you posted on progress going forward.
I also came home from hospital, to an appointment to croom hospital to be seen by the Musculoskeletal team in November, so that came through after all only 3 years to wait in all!
In the meantime, my sorry ass has to get used to this chair and ill do a blog post next on the few funny things I have noticed while starting to use the chair, It has been most interesting to see how others start to treat you! 😉