Zena’s Online Journal MS Journey
2024
05/11/24
“Oops I did it again” just like Britney Spears sang but it was not me singing but more like shrieking even after my mum warned me not to do anything in the kitchen, I thought air fryers were harmless enough, but I thought wrong. After my last mishap with the oven, I was told under no circumstances to go anywhere near the cooker. So as my mother so kindly put it I have a memory of a goldfish I went into the kitchen and although the air fryer had finished doing its thing I eagerly wanted the onion rings, so before it even had a chance to cool down, I stuck my hand into the tray not thinking about the sides of the container and hey presto this happened. My mum was not impressed. i am now banned from the kitchen. The only problem is I hate being molly-cuddled. I am a 23-year-old woman, not a toddler.
On another note, I have my annual appointment with the neurologist tomorrow (06/11/24) and I believe it is a waste of time because he did not request the annual MRI as he was supposed to. So with the lack of data, I guess we will just be talking about the weather (that’s me being sarcastic).
I did have a one-on-one about my health with my mum when we were talking about smartwatches and blood pressure monitoring and I said that my heart resting after ten minutes is always 120 and when I get stressed it hits 140 bpm.
I have a whole list of ailments I could discuss but all of them would need further investigations e.g. MRI & CT scan, with a shooting pain through my eyeballs to a burning sensation in my shoulder and chest pains. My legs constantly hurt and people have gotten used to me complaining. I usually rely on my mother to do the research, when it comes to my symptoms that I do not understand, considering depending on the NHS to help me is not guaranteed. I am starting to be very forgetful, especially with my meds, and have to have alarms going off the remind me. Considering I am doing my master’s I need to write everything down otherwise I forget. I do have to give my mum kudos for being there for me when I am a blubbering mess and things overwhelm me to the point I feel very depressed and burned out. She has a knack for making me feel better and through her own life experiences says what she would do if she were a younger self. I guess as you get older you learn from your mistakes and pass your knowledge down to your kids.
Anyway that’s it for now, I will update once I get some feedback from Prof.
Chat to you in a few days and wish me luck x.
23/10/24
As I start my post-grad journey, I am struggling with my memory, I am finding it hard to remember things or where I put them. I have to have my carer (my mum) remind me to take my meds and the stress it causes me is an understatement. I am due to see my neurologist next month where I will discuss the shooting pain I have experienced in the back of my eyes. I had cataract surgery at the tender age of 16 and my optician has told me I have a cataract in my other eye, which would mean I would need to have another operation. My health is unbearable at times but I try to stay positive most of the time and spend a good couple of hours being mentored, empowered, and motivated. All things like grocery shopping and admin are done for me. All I have to concentrate on is my studying, even though my memory is challenging. I also have noticed a brown spot on my skin, which the nurse described as a mole without even looking at it, whilst I was on the phone to her. This is another thing I will be mentioning to Prof next month as well as the pain in my breasts. I am concerned about the treatment I had Alemtuzumab (Lemtrada) as it can give you cancer, never mind all the vaccinations I had for COVID-19. I hope and pray everything is fine and won’t get worse. I worry about my health but do not let on to the people I care about, I just soldier on.
Anyway if I have any news I will update it here.
xx
23/08/24
I am not in a good place in my head right now, not only did I hear about my grandmother’s friend dying the other day, but I am also in mourning the passing of two pets that died on the same day one of which killed the smaller dog and consequently the bigger one was put down. I have been given emotional support by my mum but I am finding it hard to come to terms with it all. Three deaths in one week is hard going and I just need some time out to heal. My stomach is all in knots with a bad belly and I am very tearful where my eyes are puffy from all the crying. On top of this, there is a global health warning on the Mpox virus so I need to be extra vigilant when I am out and about especially in crowded places.
I am finding it hard to cope at the moment and am thankful I have a support network in place to simply vent when need be.
I will update again when I am on the road to recovery or if anything changes in my circumstances.
05/08/24
I have not learned from a previous accident about 2 months ago and thought to update my journal with something that happened to me a couple of days ago. I am not blaming anyone other than myself for not being careful and not listening to my mother the first time around. Even though I have a carer (my mum) I still want an element of independence and attempted to take a pizza out of the oven by myself.
This is the result as I leaned my arm against the tray. I have put aftersun on it but it hurts like mad and is now blistering. I have some Savlon cream which I will use and hopefully, it will heal.
This now shows the world that one does not have to be severely disabled to have an accident and in my case, I need a carer in the kitchen. My mum is my rock and is ready and willing to do most things albeit she has to use PPE as she has her disabilities to contend with.
As you can see it is a running theme in my journal entries where I am having mishaps in the kitchen. I am desperately needing my independence and it is hard to accept that I do need help. To the untrained eye, people would not think there was anything wrong with me unless I told them. But behind closed doors not only do I feel very low I am trying to paint a picture of a person who looks normal on the outside but a nervous wreck on the inside. My mum has taught me to keep myself busy and keep on going so that is what I aim to do. Hopefully, there will be new treatments and innovations available to treat MS as I walk the path of uncertainty, I won’t know the results of my MRI until later this year, so I am hoping the neurologist has some good news as I cannot go through another round of chemotherapy treatment again.
Until next time bye for now x.
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.
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
Zena has just graduated in BA Hons Marketing Management at Cardiff Metropolitan University on the 17th July 2024, Zena has continued with her learning and has embarked on furthering her academic knowledge studying for a Masters Degree in International Business at Cardiff Metropolitan University.
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 has additional help, whenever she needs it.
Zena aspires to be a role model for young people with Multiple Sclerosis. She suffers from chronic pain symptoms in the legs and has noticed cognitive impairment and muscle weakness.
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,. She also does social media management, content creation and digital marketing.