Discharge tomorrow

I am so much improved, have way more energy, and better mobility. The steroids, which were originally given to reduce airway inflammation, have been tapered from today. I do believe they have had a direct beneficial effect too on this bad MS exacerbation which took such control of me.

Yesterday the Physiotherapist came to see me, and reassured me I am doing everything right for myself. He thinks I have approached my illness realistically in anticipating my needs, and have taken on board that my condition is a progressive one.

Today the Occupational Therapist visited and gave me a form which she urged me to fill in to be at least theoretically able to access personal supplies, home alterations etc as will likely be needed. MS is covered in the rather outdated Long Term Illness Scheme, so she assures me I qualify. I am already covered for my present general meds on the Drugs Payment Scheme, but “getting on the books” of the local HSE health services will be important going forward.

I discussed my idea to move to a ground floor dwelling with own front door, the reason being that egress and access to the entrance to my apartment building is very difficult when I have poor mobility and am using a wheeled mobility aid. She is going to write to the professor in charge of the public hospital MS clinic which I attend, so that he is appraised of my general bit of a step down on the mobility scale. The public hospital simply is not resourced to assess me properly, so it is such a good thing I called here for attention.

Dressing myself can be an issue with me in that when I try to pull trousers or socks on, I get disturbing cramps in my muscles, although these are ameliorated by the Baclofen. I can get devices to help pull these on.

Foot Drop is a recurrent and unpredictable issue with me, happens in either foot and sometimes both feet at the same time. I already got some cheap foot supports in Dealz which work when it’s moderate. For more severe occasions I can get full proper supports, which aren’t exactly items of style and glamour.

The Swallow Video Fluoroscopy proved my oesophagus is functioning very well at the moment, in fact the swallow is so fast it needed radiographer to use particularly fast-tracking! There are some bits of me working well!

I am in my 4th room in as many days on 6th floor this time. Turns out I am a superbug carrier, kind of a walking pathogen Petri dish. The ESBL isn’t doing me any harm presently, but I am a risk to more vulnerable patients.

I have been so well-taken care of and now feel confident the Beacon Hospital can look after aspects of my management. I was very unwell coming in such that the improvement in me is now considerable and I’m taking a great interest in living and improving my life as much as possible.

I have been encouraged to very seriously consider going ahead with the major & risky gynae surgery under expert surgeon Mr Kamran: the surgery which would remove cervical cancer risk and would give me a chance to perhaps receive Disease Modifying Treatment and with it the hope of a stretch in my relative independence.