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Zena’s Online Journal MS Journey

2024


22/06/24

I have decided to make a quick update about my health, my vitamin D therapy did help me and I did see a slight improvement until today as I noticed muscle weakness in my wrists to the point I scalded my knees after attempting to take some bacon which was on a tray out of the oven and the fat spilled and went over my knees, from losing my grip. Call me stubborn but I want to have some independence and do not want my mum at my beck and call all the time, albeit she was cross with me for not letting her into the kitchen. She advised me to wrap some frozen peas wrapped in a towel and put that over my knees. Yes, it was painful and could have been a lot worse but the lesson here is I need my mum to help me with certain things and I put today’s incident down to my MS.

Another thing I have noticed is if I bend over I have excruciating pain and stiffness in my back, so what I have to do is squat rather than bend.

I am also experiencing a lot of migraine-type headaches, I am not sure if that has to do with the lesion on my pineal gland or my cataracts. I am due a check-up with my neurologist in October so it will be interesting what else they have found. I am tired most days and my legs hurt pretty much all the time, even though I do have medication it seems it’s not working, and I need my meds increased. On a scale of 1 to 10 with 1 being good and 10 being bad, my pain is about a 9 most days. My neurologist also needs to give me something for my headaches. I will discuss this with my neurologist closer to the time, it’s not worth going to my GP as they do not have a clue, and the last time I tried to tell them they gave me Gaviscon, but in actual fact I was diagnosed with MS when I went to A&E because my mum was fuming with the general practitioner’s response.

On another note off-topic, I am graduating next month with a degree in marketing management with BA Honors. I am going on to do a master’s degree in international digital marketing later this year, which hopefully will open some prestigious doors for me. Wish me luck 🙂 My mum will push me to do a PhD if she has it her way, we will just have to wait and see.

Anyway, that’s it for now, will catch up again soon.


19/05/24

I am not happy, I have run out of Amitriptyline, I have loads of Gabapentin and I do not understand why.

According to my mother, there is a shortage of medication and she mentioned trade wars, what about my health dare I ask, I am sure I cannot stop my medication willy-nilly.

I am not impressed. My health, I have pains in my legs to the point I need to sit down. I have been known to sit on a floor when I cannot find seating.

I will update again after I have my Vitamin D Therapy.


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.

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Zena is about to graduate in BA Hons Marketing Management at Cardiff Metropolitan University on the 17th July 2024, and plans on doing her Masters later this year.

Zena may look normal to an untrained eye even though she has an invisible disability. Thanks to a great support network she is able to fit into society and can get additional help, whenever she needs it.

Zena aspires to be a role model for young people with Multiple Sclerosis.

Zena works remotely which does not put a strain on her health. She writes articles and posts on an array of subjects, namely health and wellbeing, business, AI. She also does social media management, content creation and digital marketing.

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