Zena’s Online Journal MS Journey
2024
15/05/24
Today I woke up with an excruciating pain in the back of my neck, it lingered even after taking painkillers and a warm compress which my mum advised me to do. I do not know if I slept funny or if it is my MS playing up. I won’t be seeing my neurologist until the end of the year so I do not know what the outcome is going to be.
That’s it for today, nothing more to report.
13/04/24
I thought I would quickly check in, I am experiencing a neuropathic itch in my right shoulder. It’s an itch I cannot scratch and cannot get to, which is frustrating, according to research it could be lesions in my nervous system. The other sensation is burning in my lungs and throat. It is not acid reflux or an allergic reaction, so all I can think is I am coming down with something and frankly do not feel very well.
Due to the fact I am in full-time university in my final year for a degree in marketing management, I do not have time to update the journal as often as I should. I am not always very vocal about my symptoms and just grin and bear whatever is ailing me.
I have relapsed a few times, with burning in my legs and numbness in my toes, I have spoken with the MS team, and unless something drastic happens they will not do anything other than prescribe stronger medication.
Most recently 19/03/24 I did something to my back and my GP prescribed a week’s supply of Naproxen 20/03/24. I put a heat pad on the base of my spine but I have what I can describe as growing pains in my hips. I do not know if this is MS-related and won’t know until I have an MRI later this year. My consultant is in India at the moment so fat chance of finding anything out before he returns. The GP did not think it was a slipped disc and considered the possibility it could be a trapped sciatica nerve. I can hardly bend over. My mother has similar problems and we are wondering as she had an epidural when she had me and I had a lumbar puncture before I had my treatment if it has anything to do with this.
My MS Health
I am constantly tired and need a regular flow of caffeine to make me stay awake. My legs are a problem, I must admit and I am supervised by mum when I am at home. She is my rock and I am hers.
I will try to make more of an effort with my journalling, but if I do not tell my mum every five minutes what aches and pains I have she cannot update this journal on my behalf.
I will try to come back here soon x
2022 -2023
This is my online diary of my health, this is a place I come to release all my frustration and vent. Sometimes you just have to let off steam…
As most of my family, friends, and followers already know I am about to start treatment with ‘Lemtrada Alemtuzumab’ on the 4th of July. But first I needed to start my listeria diet, which I have. The amount of stress this is causing me is unreal, not only for the preparation for the treatment but also for life’s hurdles. Today I am up at the hospital to have my blood and collect a prescription that should have been ready for me to collect but I have to waste one and a half hours waiting for it to be prepared. I have previously done work experience whilst I was in the sixth form at this hospital and have been shown how the medicines are dispensed. Basically, someone types something into the computer, and a revolutionary machine sorts it out, dispenses it, and then all the pharmacists do is stick a sticker on it, it’s that quick, so I do not understand the hold-up.
STRESS
But my stress is a build-up of other events that are going on in my life. For example ‘Transport For Wales’ is constantly on my case going on that they have not received my new PIP award. PIP is so backlogged that they keep reviewing every 3 months without actually awarding anyone and it is just a waiting game. When I first applied I was told by (TFW) that I was not disabled enough to qualify for a bus pass but that was overturned as I had a (PIP) award.
“I have relapsed and am due to start treatment on 4th July 2022 and if that is not proof I have a progressive disease, I do not know what is. I am not going to jump through hoops for no -one, just to justify that I am disabled. My letter from the hospital should be evidence enough”!
My mother who is my carer has reached out to the ‘Transport For Wales’ (TFW) Agency and it seems it goes over their heads even going as far as saying that they have not received anything from me or from her. My mother wrote an article regarding bus passes and is waiting for an update. https://disabledentrepreneur.uk/bus-passes-for-the-disabled/
The stress this is causing me is unbelievable. It does not stop there, a few years ago I had my blood taken at the same hospital that I visited today and one of the nurses butchered my vein, a few years later I think I had the same woman because my arm is in so much pain.
My Health
Like I said it is one obstacle after another. I am on my third week of coughing as I have a viral infection but have been told by the Neurologist and the MS Team that I need to get rid of my cough before starting my treatment, otherwise, it won’t go ahead, I was told by the MS Team to start antibiotics prescribed by my GP last week.
To get a consultation with a GP, I had to phone the doctor’s practice and was told by the receptionist my matter was not an emergency and to phone back, the following day on a first come first seen basis. (Excuse me but since when are receptionists qualified to make those decisions)?
I phoned back again the same day and this time I said the consultant at the hospital insisted it was urgent to which I was told by the receptionist a doctor would phone me. (This could have been done and dusted on my first call but it is what it is and is done now).
I waited all afternoon and finally spoke with the head doctor at the practice (Dr.C) who had a tone on her like I was inconveniencing her. (Sorry is there something more important that you could be doing, rather than dealing with me)?
So all in all I am not coping well, especially with people who are ignorant or simply do not care.
Other Entries:
- https://disabledentrepreneur.uk/young-warriors-journey-with-multiple-sclerosis/
- https://disabledentrepreneur.uk/anxiety-understanding-and-coping-with-a-common-emotional-disorder/
- https://disabledentrepreneur.uk/multiple-sclerosis-monthly-blood-tests-as-required-by-alemtuzumab-lemrada-com/
- https://disabledentrepreneur.uk/zenas-online-journal-health-update-catching-covid/
- https://disabledentrepreneur.uk/zenas-online-journal-alemtuzumab/
- https://disabledentrepreneur.uk/zenas-online-journal-diary-of-my-multiple-sclerosis-journey
#multiplesclerosis #ms #neurology #nhs #gp #tfw #onlinejournal #zenasonlinejournal