Zena’s Online Journal is about Zena’s journey in dealing with Multiple Sclerosis. It documents Zena’s ups and downs. Zena’s life has not been an easy one but she tries to not let get MS in the way of her hopes, dreams; and aspirations. Her attitude is “If life deals you lemons, then make lemonade”. Zena likes to support, motivate and empower young people suffering from MS. Zena’s illness is an invisible and progressive one. She has relapsed twice. Zena works remotely so as not to add extra strain to her disability. Zena is an MS Warrior.
Zena has her own personal brand website: https://zenasjournal.com/
Embracing Life’s Uncharted Path: A Young Warrior’s Journey with Multiple Sclerosis
Today, we embark on a poignant journey into the life of a remarkable young individual, whose path is illuminated not just by the exuberance of youth but also by the shadows cast by a challenging companion – Multiple Sclerosis (MS).
1. The Unseen Struggle
Zena is a vibrant soul in her early twenties, whose life took an unexpected turn when she was diagnosed with Multiple Sclerosis. MS, a chronic autoimmune disease affecting the central nervous system, thrust Zena into uncharted territory. The initial shock and disbelief were palpable, yet in the midst of uncertainty, she discovered an inner strength that would become the guiding force in her journey.
2. Resilience Amidst Uncertainty
Living with MS meant facing daily battles, both seen and unseen. Fatigue, mobility challenges, and cognitive fluctuations became part of her daily tapestry. However, Zena’s resilience emerged as a beacon of light, guiding her through the unpredictable terrain. She embraced each day with courage, determined not to let MS define the boundaries of her aspirations.
3. The Support System
Central to Zena’s journey has been the unwavering support of family and friends. Their understanding, encouragement, and empathy created a cocoon of strength around her. Together, they shattered the misconceptions surrounding MS, fostering an environment where Zena could flourish despite the challenges.
4. Redefining Normalcy
For Zena, normalcy became a subjective concept. Everyday victories, whether big or small, took on a profound significance. From navigating the campus with assistive devices to adapting her study routines to accommodate the ebb and flow of symptoms, she redefined normalcy on her terms, refusing to let MS cast a shadow on her ambitions.
5. Advocacy and Awareness
In the face of adversity, Zena found a calling – advocating for MS awareness. She became a vocal proponent of dispelling myths, fostering understanding, and championing research. Through her advocacy, she aimed to create a world where individuals with MS are not defined by their condition but celebrated for their resilience and accomplishments.
6. Celebrating Triumphs
While MS brought its challenges, it also unveiled unexpected triumphs. Zena’s journey was punctuated by academic achievements, personal milestones, and moments of joy that underscored the triumph of the human spirit. Her story serves as an inspiration to others facing similar battles, reminding them that life’s beauty persists even in the face of adversity.
7. Symptoms
Back Pain
Extreme headaches (migraines, 3 occasions – head felt like it was going to explode)
Neuropathic itch in the right shoulder (can last for hours/days)
The altered sensation in my right bum cheek (tingling) lasted 1 day and has reoccurred occasionally and lasts for about an hour or until no longer noticed.
Pins and needles on the right foot (last 3 toes) when initially putting weight on my foot – lasted 2 weeks
Pain in the left arm feels the same as on the legs and spreads from the wrist up to the shoulder – on 2 occasions
Ms hug in the collarbone
Pitted nails
(Monday 6th November 23) ⁃ Altered sensation in right knee – felt wet/ cooling – end of the week, up my right thigh
Friday 10th)⁃ (Saturday 11th) spread down the right side of the calf, part of my bum, possibly into the ankle.
(Saturday 18th) reduced to just the side of the calf, maybe part of the knee but not as noticeable
(Sunday 19th) altered sensation is gone – extreme pain in the lower back, shooting pain, and extreme pressure when trying to turn/bend.
Conclusion:
As we navigate the intricacies of Zena’s journey with Multiple Sclerosis, we find not a tale of defeat but a narrative of triumph over adversity. Her story exemplifies the resilience and courage that define the human spirit, showcasing that even in the face of unpredictable challenges, one can carve a path of hope, purpose, and fulfillment. Through Zena’s eyes, we glimpse the power of embracing life’s uncharted path, discovering strength in vulnerability, and rewriting the narrative of what it means to thrive with Multiple Sclerosis.
Anxiety: Understanding and Coping with a Common Emotional Disorder
Anxiety is a common emotional disorder that affects millions of people around the world.
It is characterized by feelings of worry, nervousness, and fear, and it can have a significant impact on an individual’s quality of life. Despite its prevalence, many people still do not understand what anxiety is, how it develops, and how it can be treated.
What is Anxiety?
Anxiety is a normal response to stress and danger. It prepares us to face a challenge or respond to an emergency by increasing our heart rate, sweating, and tensing our muscles. However, anxiety becomes a problem when it interferes with our daily activities and causes significant distress.
There are several types of anxiety disorders, including generalized anxiety disorder, panic disorder, social anxiety disorder, and specific phobias. Each type of anxiety disorder has unique symptoms, but all share the common theme of excessive, persistent worry and fear.
What Causes Anxiety?
The exact cause of anxiety is not well understood, but it is thought to be a combination of genetic, environmental, and psychological factors. People with a family history of anxiety are more likely to develop the disorder, and traumatic life events, such as abuse, neglect, or loss, can trigger anxiety symptoms. Additionally, chronic stress, substance abuse, and certain medical conditions can also contribute to the development of anxiety.
How to Manage Anxiety
Fortunately, anxiety is a treatable condition, and there are several effective strategies for managing its symptoms. Some of the most commonly used strategies include:
Cognitive-behavioral therapy (CBT): CBT is a type of therapy that helps individuals understand and change negative thoughts and behaviors that contribute to anxiety.
Medication: Antidepressant and anti-anxiety medications, such as selective serotonin reuptake inhibitors (SSRIs) and benzodiazepines, can be effective in reducing anxiety symptoms.
Exercise: Regular exercise has been shown to have a positive impact on anxiety by reducing stress and improving mood.
Relaxation techniques: Techniques such as deep breathing, progressive muscle relaxation, and mindfulness can help reduce physical symptoms of anxiety and promote a sense of calm.
Lifestyle changes: Simple lifestyle changes, such as getting enough sleep, eating a healthy diet, and reducing caffeine and alcohol consumption, can also help reduce anxiety symptoms.
How Anxiety Affects Me
From a personal perspective anxiety comes and goes. It is the fear of the unknown that can spiral into stress, panic attacks, depression, and procrastination. For example, bearing in mind it is a Sunday so you would not expect any businesses to call you today, yet I noticed a missed call. Not knowing who it was that was calling me, I withheld my number and proceeded to call the number back and I was put through to the DWP.
Update Monday 13th February 2023. I had another missed call today and this time they left a message that they will phone me between 11 -12 despite me telling the PIP assessor I am in University Mon, Tue & Fri. I did accept the call when they rang and they said they are increasing my PIP payments as they needed some more information about my mobility. So it looks like they work Sundays as well.
Stress & Anxiety impact on a sufferer of multiple sclerosis.
Considering I have voice mail activated you would think the person that was trying to reach me would leave a message, but unfortunately, they didn’t which has now made me feel anxious and on edge. Stress and anxiety can cause a person suffering from multiple sclerosis to relapse.Relapsing remitting MS (RRMS) | Multiple Sclerosis Society UK (mssociety.org.uk)
Fortunately, I have my mum as my rock and she tried reassuring me that they will write to you if they cannot get in touch and that I needn’t worry as she will take care of things for me.
Conclusion
Anxiety is a common and treatable emotional disorder through medication, CBT therapy, and hypnosis. It can have a significant impact on an individual’s quality of life. By understanding its causes and learning how to manage its symptoms, people with anxiety can take back control of their lives and improve their overall well-being. If you are experiencing symptoms of anxiety, it is important to seek help from a mental health professional who can provide an accurate diagnosis and develop an effective treatment plan.
Multiple Sclerosis Monthly Blood Tests as required by Alemtuzumab Lemrada.com
As my followers know I suffer from multiple sclerosis and have had the ‘alemtuzumab’ treatment which clearly stipulates on the Lemtrada website that patients should have monthly blood tests done to help detect side effects early.
Upon having a recent consultation at Rockwood Hospital Cardiff, part of the UHW Neurology Department, the consultant asked me when did I have my blood test done. Surely he should have had that in front of him and not relied on a patient to update him. This is poor management and medical care.
So after it was established I have not had my blood test done for a good few months, he said he would arrange for them to be done every month because during Covid Lockdown it was every 3 months and we are no longer in lockdown, so there should be no excuse. (This is against the terms of Lemtrada policy).
Lemtrada website says:BEGIN YOUR MONTHLY MONITORING
Certain side effects of LEMTRADA can happen months and even years after treatment. That’s why it is important to begin monitoring after your first infusion and continue regular monitoring until 4 years after your last infusion. Monitoring can help your healthcare team find potential side effects early.
So we are nearly in the month of December and after my consultation in October, I am still waiting for a letter to see when I should have my blood test done.
I should not be the one to be chasing them. It is their job to make sure patients have regular blood tests!
This in my eyes is NHS medical negligence.
Clearly the consultant I went to see did know what he was doing because the letter he wrote to my doctor contradicted his statement as I am on the highest dosage of painkillers Gabapentin. I wrote to my neurologist and asked for the error to be rectified, which has now been updated.
“I should not be going out of my way to remind them to do their jobs, it is their responsibility to make sure I have my monthly blood tests done”.
Update 09/12/22
It has been five months since my last treatment and I have only had one blood test done. I am going to see if the meds that the consultant prescribed are ready for collection and if not I will be writing a stern email to the Professor of Neurology.
Zena’s Online Journal Health Update, Catching Covid.
During my first week back in uni, I catch covid, and worse still my mum has caught it too.
I first noticed the day before I did a test I had a bit of a sore throat but the following day rapidly it turned into a cough.
I thought with all the vaccines I had I would not catch it, obviously, I was wrong because upon doing some research I found that people who have had vaccines aren’t automatically protected from the virus. Vaccines don’t kill the virus or pathogen they target. Rather, vaccines stimulate a person’s immune system to create antibodies. These antibodies are specific against the virus or pathogen for the vaccine and allow the body to fight infection before it takes hold and causes severe disease.
However, some people won’t have strong enough immune such as myself, and won’t respond to the vaccine which may still make people like me who have had their immune suppressed from treatment for Multiple Sclerosis susceptible to developing COVID-19 if exposed to the virus. How a person responds to a vaccine is impacted by a number of host factors, including age, gender, medications, diet, exercise, health, and stress levels.
My mum who has not had a single vaccine did not have a sore throat just a fever and a cough and says she is 75% feeling better. They say cats can get covid, hope my cat is a lucky black cat.
I am now feeling better although I still have a cough and feel tired.
It was touch and go last week as I was just getting over my chest infection. I had to have emergency antibiotics to clear the infection before starting my treatment, followed by an x-ray to make sure it was safe to go on to the next phase.
08.00 am
So today is the day and I am having my treatment, I am now hooked up to the infusion drip, I have had steroids, aciclovir, 1 x antihistamine, 1 x antibiotic, 2 x paracetamols, and ibuprofen.
I feel I should have gotten there a little earlier because by the time I had my ECG done this morning I started to get hungry. My mum told me to order a Deliveroo, which I would not do, can you just imagine a pizza delivery rolling up.
Anyway, I have two more days of this so will keep you updated as the days progress.
15.52 pm.
My treatment is over for the day but I have a very high temperature and a really bad headache. They are monitoring me for the next two hours.
I did not bring my Apple watch to monitor my heart rate although it was noted on their machines that my heart rate spiked to 180/60.
I will charge my watch tonight.
I had to share my room with another lady who told me she was only in for the day and was only getting one day of treatment as she suffers from Stiff Person Syndrome. She told me she gave up her career in Law because of her illness.
I won’t post two more separate posts but instead, I will just update a continuation of this one tomorrow.
Update 05/07/22
My temp was a little high 37.6 -37.7 but we came to the conclusion it was probably because I walked in and it’s warm out. The nurse said I had a higher level of glucose in my wee but she said it was probably from my steroids yesterday and told me to avoid eating so much sugar and then lastly I had an elevated CRP level in my blood which can be an indication of infection but because I’m not showing any symptoms of infection, they’ve decided to continue with the treatment.
I’m on steroids as we speak. The doctor from yesterday annoyed me, he just stares and lingers and then comes over and tells me about my blood and asks to listen to my chest then tells me to breathe in and out, like wtf do you think I normally do? (I get it, he was checking my lungs but what is the point when I had an x-ray to check for a chest infection) Does he not think I breathe on the regular? 🙄
I’ve had my cannula removed, don’t think my vein could handle it any longer because the nurse said she could see it was a bit swollen and I did say it was really tender to touch so she just said she’ll take it out and re-do it.
Update 06/07/22
Today is my last day of treatment and have had the awful doctor again today that does not wear his name badge and only introduces himself as ‘Doctor’ he never takes notes or writes anything down. With a little investigation, I found that all doctors and medical staff have to wear name badges otherwise they could face disciplinary action. Read the NHS Policy below:
I should by rights report him and have sneakily taken a photo of him whilst he was not looking. ( I have not published it because of data protection but it is on my phone). He could be a civilian pretending to be a doctor for all I know and it seems weird that he gives off bad vibes, even the patients sharing my room agree with me.
08.13 am
My obs were fine and so is my wee.
Will give a final update once I have left the hospital later today.
13.37 pm
I had to have a second blood test done of the day not sure why.
15.37 pm
I had to have my third blood test because someone lost my second set of blood in transport so I’m not in the best of moods.
16.32 pm
I was finally discharged. I was told that they have marked my blood as urgent and if I do not hear back from them no news is good news so to speak.
I did not have a high-temperature today, but I did have severe heartburn, and everything I drank and ate tasted metal, even the tuna sandwich. I also started to have a headache.
I am glad it’s over, although for the next 3 weeks I have to self-isolate.
I will now just have to wait for my next MRI to see what changes have happened but that won’t be until later this year Sept/Oct time.
Update 07/07/22
Just a quick update the dreaded rash has reared its ugly head it is all over my legs and my arms. I have antihistamines which the hospital gave me but it is not a prevention of getting the rash or a cure it is just a remedy to ease the discomfort. I am going to buy some chamomile lotion which I am surprised the hospital did not give me. I suppose because they did not see a rash at the time I was on the ward I guess they thought I did not need it. I look like I have chicken pox.
08/07/22
LEGS UPPER AND LOWER.
TORSO
How long does it take for your immune system to recover after Lemtrada?
After IV administration, there is rapid and profound lymphopenia that gradually recovers (return of absolute lymphocyte count to the lower limit of normal in 40% of patients at 6 months and in 80% by 12 months).
Is alemtuzumab a chemotherapy?
Alemtuzumab is a type of targeted cancer drug. It’s a treatment for some types of leukaemia and skin lymphoma. And may be used as part of a stem cell transplant.
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.
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.
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 withpeople who are ignorant orsimply do not care.
You can apply for a disabled person’s bus pass or rail card if you have an illness and you cannot manage to walk long distances.
People with, mental, physical, and learning disabilities are entitled to apply.
The criteria are that you have to be receiving personal independence payments or a disability living allowance.
You or someone else can apply on your behalf, such as a friend, family member, or carer.
Once approved you will be able to travel for free by bus or get 30% off your train tickets.
Most applications are through your local council as they are the ones that are in charge of public (bus) transport.
Alternatively, you can contact your localCitizens Advicewhich can help you with the application if you need it.
Applying for a railcard
You need to use this link to Find out if you’re eligible and how to apply on the National Rail website. Unfortunately, if you do not qualify, you will have to pay the full price for your train tickets. If your application gets rejected you cannot appeal.
Applying for a disabled person’s bus pass
Criteria:
you are blind or partially sighted, deaf, or unable to speak.
you cannot walk very far because of a disability, illness, or injuries, such as multiple sclerosis or autoimmune disorder, or a mental illness.
you are immobilized you do not have arms or legs.
you have a severe learning disability.
you’ve been refused a driving license because of your health (but not because of problems with drugs or alcohol). (Although drug addiction and alcoholism is also an illness).
To know if you are entitled to a free bus pass visit the Government website on GOV.UK and see what evidence you’ll need to show if you are eligible.
If you live in London
You’ll need to apply for a ‘Disabled Person’s Freedom Pass’ instead. The eligibility criteria are the same as for the rest of England.
If you don’t qualify for a Disabled Person’s Freedom Pass, you can ask your council for a ‘discretionary bus pass’. Some London councils give these to people who aren’t eligible for a Freedom Pass but have problems getting around.
You might be able to use Dial-a-ride – a free door-to-door bus service run by Transport for London (TfL). You can become a member if you have a long-term disability or if you’re over 85 years old.
a Blue Badge– to help you or someone who drives you around the park more conveniently and in disability parking zones at grocery stores.
It’s also worth checking you’re getting all the benefits you’re entitled to – you can use our benefits checker to easily find out.
Final Thoughts From The Editor
Remember you should get what you are entitled to and councils will not make it easy for you otherwise everyone would be doing it.
You have to stand up for your rights or have someone that can appeal on your behalf.
With this said my daughter who has multiple sclerosis and has relapsed, thus is starting her round of treatment of Lemtrada Alemtuzamab on the 4th of July 2022 and finds it hard to walk long distances is in receipt of Personal Independence Payments. Her review for PIP has been postponed and keeps being postponed every 3 months. I am my daughter’s carer and find that this is causing unnecessary stress for my daughter and I have cited that stress can cause people with multiple sclerosis to relapse.
I will come back with an update once I hear back from our local council regarding my daughter’s bus pass. I am finding organizations from Blue Chip Companies to Government Offices either are not fully trained when it comes to the consequences of their actions. A person who is relapsing does not want added stress to further make their illness any worse and God forbid become bedridden.
I have been on the Cardiff Council Travel Website: https://portal.tfw.wales/en/disabledThere is no page that says for customers to appeal. I then proceeded to by phoning them and completely forgot the question I needed for this site (cognitive impairment) 🤣😂 although went on to mention my daughter and the woman I spoke to said that nothing was received from my daughter. She also said it is the council’s decision and not theirs, excuse me you are an agency part of the council.
I regret to inform you that unfortunately, your daughter does not qualify for the Disabled Concessionary Bus Pass. As an organization, we are only able to approve applicants that score the points specified below on one or more of the following descriptors.
Department for Work and Pensions (DWP) Personal Independence Payment (PIP) Statement of Entitlement, which shows:Department for Work and Pensions (DWP) Disability Living Allowance (DLA) award letter, which gives details of a Higher Rate Mobility Component (HRMC) award.
8 or more points under Descriptor 7 “Communicating Verbally”; or 12 points under Descriptor 11 “Planning and Following a Journey”; or 8 or more points under Descriptor 12 “Moving Around”.
Please note: The PIP descriptors and their individual scores MUST NOT be added together. Unfortunately, as an organization, we are unable to carry out individual assessments, however, in this instance, I would recommend getting in touch with your local authority, who will be able to carry out an assessment to clarify if she is eligible for the pass.
Cardiff Council. County Hall, Atlantic Wharf, Cardiff, CF10 4UW. Tel – 02920 872087
Hopefully, this gives some reassurance that there are options that you are able to explore
Kind regards
Leila Rad-Andrews
My Comments.
The above email is inaccurate because the last time my daughter had an assessment was in 2018 and since then she has lapsed twice. My daughter has since done an online assessment test which states she has between 15 & 19 points.
Despite sending in multiple emails including my daughter’s PIP award they have had the audacity to decline my daughter a bus pass.
She is currently in hospital having Lemtrada Alemtuzumab treatment for her Multiple Sclerosis as she has relapsed and this is causing her unnecessary emotional distress which could lead to further relapses.
“If it is found that my daughter relapses again because of the stress this is causing her, somebody should be heldresponsible”.
Update 07/07/22
As my daughter’s carer, I am shocked at how I have been given the runaround. Transport for Wales wrote to both my daughter and me in an email stating that she was not entitled to a bus pass because she did not have enough points.
I explained since the last assessment she has since relapsed and just come out of hospital for her treatment yesterday. So any changes will not be reflected. It is as if the arse does not know what the elbow is doing because when I phoned the number that ‘Transport For Wales’ gave me (which was the switchboard for Cardiff City Council) I was then re-directed back to ‘Transport For Wales’ who told me it was Cardiff City Council Hub-Team that I needed to speak to. I then phoned the number again and was told I had to phone 02920871071 which I did, who then told me I had to speak with the Library. I spoke with the hub/library two days ago and I was sent out an application form even though my daughter already filled one in?
We have submitted all the relevant information by email and we are simply getting the runaround. I finally got an email address advicehub@cardiff.gov.uk yet the hub two days ago said they do not have email addresses, yet today the number I phoned told me to go to the library (as if I am going to shut down my business to take time out is hilarious and beyond unbelievable 😂🤣)… and miraculously they found an email address 😂🤣.
According to ‘Transport For Wales’, my daughter is ‘NOT DISABLED ENOUGH’ to be entitled to a bus pass, even though she has ‘MULTIPLE SCLEROSIS’ and has relapsed.
I said in mid-flow of the conversation that this is to do with Government purse strings and the guy I spoke to had not got a clue what I was talking about (I have no words 😂🤣 ).
The criteria are as follows:
(One needs twelve points to qualify).
What the points criteria do not mention is:
(Conveniently)…
Do you experience:
Stress
Anxiety
Depression
Suicidal Thoughts
Intrusive Thoughts
Cognitive Impairment
Loss of Balance
Insomnia
Experience Pain
Numbness
Experience Light Headiness
Confusion
Lack of Concentration
Social Disconnection
Forgetfulness
I will update you once again once I get a response from the Advice Hub.
“I dread to think about what the stress could potentially do to someone with progressive autoimmune disease”.
I could feel myself blowing a gasket never mind someone with multiple sclerosis who has literally come out of hospital for treatment because of a relapse.
If you have any questions or need to be steered in the right direction do drop us a line using the form below:
New Study Shows Mold Triggers Brain Inflammation and can cause Multiple Sclerosis.
Black mold is dangerous and living in conditions where spores are present can lead to serious health conditions. Often people do not put two and two together and realize that their health has declined to poor living conditions.
Estimates vary, but in the US studies have shown up to 85 percent of building inspected had past water damage.
A new study found that people affected by mold illness experienced:
Brain inflammation in the hippocampus is the area of the brain that governs memory, learning, and the sleep-wake cycle.
Decreased neurogenesis, or the formation of new brain cells.
The presence of mold in your home most definitely can cause you to become chronically ill. Dampness and mold are more likely to cause respiratory problems and autoimmune disorders as well as respiratory infections, allergies, or asthma.
Damp and mold can also affect the immune system which can cause multiple sclerosis and other immune disorders.
Who’s affected?
Some people are more susceptible than others, including:
those with respiratory problems, such as allergies and asthma
those with a weakened immune system, such as those having chemotherapy, Lemtrada Alemtuzumab.
These people should stay away from dampness and mold.
How does it affect your health?
Molds produce allergens (substances that can cause an allergic reaction), irritants, and, sometimes, toxic substances.
Inhaling or touching mold spores may cause an allergic reaction, such as sneezing, a runny nose, red eyes, and skin rash. Molds can also cause asthma attacks.
By coincidence, asthma is something the tenant below me suffered from before moving out and ironically my daughter has been diagnosed with Multiple Sclerosis. I highly doubt this to be a coincidence.
Causes of damp and mold
Mold and dampness are caused by excess moisture, such as poorly heated homes, and old houses. Moisture in buildings can be caused by leaking pipes, rising damp in basements or ground floors, or rain seeping in because of damage to the roof or around wooden window frames, which are single-glazed.
“So when the gas company stated I use more gas than the average household, it is to try and keep my home warm to stop the condensation from forming more mold which is a health hazard”.
Simply saying wash it down with hot soapy water and bleach it, is just a temporary measure because it will eventually come back.Besides the spores can be airborne and you may not necessarily see you have a problem until they start growing on your walls, windows, and furniture.
A newly built home may be damp if the water used when building it is still drying out – for example, in the plaster on the walls.
Excess moisture indoors can also be caused by condensation. Having your landlord tell you to open a window to release the condensation is not practical especially if it is cold and raining outside and in the winter months.
You must access where the mold or dampness is coming from and why you have excess moisture in your home. When you know what’s causing the dampness, you can make sure your home is repaired or take steps to limit the moisture in the air.
Remember if you live on a rented property, always take photographs of the mold and the damage to your personal belongings. This is particularly important for litigation evidence.
When removing the mold listening to your landlord advising you to wash it down with soapy water is a health hazard because he/she is telling you to deal with the problem rather than him/her dealing with it themselves.
If you have been diagnosed with autoimmune disease whilst living in a property covered with black mold there may be grounds to sue your landlord/lady, especially if you have made them aware of the issue and they have done nothing about it.
If the area of the mold is large youmay need to get a professional to remove the mold for you, but if it’s only a small amount you may be able to remove it yourself, providing you are in good health. if your landlord/lady insists you deal with the mold by washing it down with bleach and soapy water and they are aware you have health issues you have grounds for litigation.
People, especially those with weakened immune systems, can develop invasive mold infections days to weeks after exposure to fungi that live in the environment.
Exposure to indoor mold that grows as a result of water damage may increase this risk.
These infections are:
Rare
Typically caused by Aspergillus, but can also be caused by other types of mold, such as mucormycosis
Difficult to diagnose
Often life-threatening
Risk Factors
These include people who:
Have had a transplant, especially hematopoietic stem cell transplants
Have cancer, especially hematologic cancers like leukemia and lymphoma
Are undergoing cancer treatment (chemotherapy)
Are taking medications that weaken the immune system, such as corticosteroids and biologics
Signs and Symptoms
Signs and symptoms can vary depending on the patient, the type of mold, and the part of the body affected, but often include the following:
Fever
Cough
Night sweats
Weight loss
Shortness of breath
Sinus symptoms
Dark scabs, blisters, or ulcers on the skin
Autoimmune Disorders
Brain Inflammation
Asthma
Skin Problems such as eczema
Respitorary problems
Diagnosis and Treatment
Diagnosing an invasive mold infection requires multiple diagnostic tests. The results of these tests should be interpreted in the context of each specific patient. These tests include:
Culture of specimens from the affected area (such as bronchoalveolar lavage [BAL]), which is often used to detect lung infections)
Biopsy of the suspected body part affected to obtain a sample for fungal culture and histopathology
Imaging of the affected part of the body (e.g., chest computed tomography [CT] for respiratory symptoms)
Blood tests (such as Aspergillus galactomannan), which are primarily used in immunocompromised patients
Starting treatment early can help prevent deaths.
Treatment includes antifungal medications and, in some cases, urgent surgery.
Consider consulting an infectious diseases specialist to help with diagnosis and treatment.
Prevention and Patient Resources
After major flooding or other exposure to water damage and mold, talk with your immunocompromised patients about how to protect themselves from mold:
Mold grows where there is moisture, usually within 24-48 hours of flooding. Even if it is not visible, it is often present.
Immunocompromised people should not enter moldy buildings or help clean up the mold.
If it is impossible for people with weakened immune systems to avoid a moldy building, they should talk with their doctor and consider wearing an N-95 respirator inside the building. Remind patients that this will still not fully protect them from becoming exposed to mold, but may reduce their risk.
If there is mold in your patient’s home, someone who is healthy and able should clean it up and fix any water problems.
Healthy people who clean up mold or spend time in areas affected by mold should wear full protective clothing including an N95 respirator, gloves, boots, long pants, and long sleeves. An N95 respirator alone may not fully protect people from becoming exposed to mold and becoming sick.
As most of you know I have had an (MS) Multiple Sclerosis Relapse and am due to have my treatment ‘Lemtrada Alemtuzumab’ any day now. I have been told I have to start a ‘Listeria Diet’. It does not help when I have been told this a few weeks ago after I signed the consent form, especially as they know that “stress can cause MS relapses” and I am getting more and more stressed and anxious waiting for the start date.
My life should not revolve around the NHS pussy footing around.
It is getting beyond a joke waking up every morning to see if I have received the letter or not.
The Professor of Neurology and the MS Team should know better than to make a patient become stressed.
If you do not know what Listeria is here are some facts:
Listeria is a genus of bacteria that acts as an intracellular parasite in mammals. Until 1992, 10 species were known, each containing two subspecies. By 2020, 21 species had been identified. The genus is named in honor of the British pioneer of sterile surgery Joseph Lister.
It’s a harmful bacterium that can be found in refrigerated, ready-to-eat foods (meat, poultry, seafood, and dairy – unpasteurized milk and milk products or foods made with unpasteurized milk), and produce harvested from soil contaminated with L. monocytogenes.
Many animals can carry this bacterium without appearing ill, and thus, it can be found in foods made from animals. L. monocytogenes is unusual because it can grow at refrigerator temperatures where most other foodborne bacteria do not. When eaten, it may cause listeriosis, an illness to which pregnant women and their unborn children are very vulnerable (autoimmune disease) with low immune systems.
Hot dogs, deli meats, and luncheon meats – unless they’re reheated until steaming hot. Greggs, McDonald’s, Subway.
Refrigerated Meal Deals,Pre-prepared sandwiches, and salads.Tesco’s Meal Deals, Boots Meal Deals, Sainsbury’s, Morrison, Cafe Food such as Starbucks, Costa-; Cafe Nero, Coffee #1, etc.
Soft cheeses like Feta, Brie, and Camembert, “blue-veined cheeses,” or “queso Blanco,” “queso fresco,” or Panela – unless they’re made with pasteurized milk. Make sure the label says, “made with pasteurized milk.”
Refrigerated pâtés or meat spreads, lunch meats like cold cuts, chicken liver.
Refrigerated smoked seafood – unless it’s in a cooked dish, such as a casserole. (Refrigerated smoked seafood, such as salmon, trout, whitefish, cod, tuna, or mackerel is most often labeled as “nova-style,” “lox,” “kippered,” “smoked,” or “jerky.” These types of fish are found in the refrigerator section or sold at deli counters of grocery stores and delicatessens), Sushi; is sold in grocery shops, cafes, and restaurants.
Raw (unpasteurized) milk or foods that contain unpasteurized milk, ice cream, and cheese made from raw milk.
Raw or lightly cooked sprouts, including alfalfa, clover, radish, and mung bean sprouts
Pre-prepared fruit including cut melon at room temperature, or refrigerated melon that has been cut for more than 7 days (This sucks as I love melon). If you are wondering why there is an emphasis on melons, this is what I found: Most melons are grown on the ground. The ground is dirty, but the rind protects the inside of the melon. The problem is that germs like E-coli, Listeria, or Salmonella can sometimes hang out on the rind. Some melons have E-coli hovering around the outside of the melon. In most cases, the E-coli germs don’t do too much to the rind of the melon. It’s the cutting of the melon that can cause the problem.https://www.canr.msu.edu/news/melons_prepare_and_store_properly_for_safe_consumption
Rare or undercooked beef, poultry, pork, and lamb. (No rare or medium-rare steaks I’m afraid).
It’s okay to eat:
Pasta cooked fresh. Can be reheated at 165%F.
Casseroles. Can be reheated at 165%F.
Freshly Cooked Rice and Curry.
Fried Food. (This kills germs but does nothing for your waste line). (KFC is not permitted because the fried food is not sold immediately it leaves the fryer, and sits on trays. The same goes for burgers the salad sits around and cheese is not permitted).
Freshly baked or roasted food. (Jacket Potatoes, Roasted Meat).
Canned Soup & Beans.
Pasteurized milk or foods that contain pasteurized milk.
Not only do you have to watch what you eat you also have to have a germ-free environment and make sure your fridge, work surface areas, and your utensils are clean and sterile.
Time to Chill
Your refrigerator should register at 40° F (4° C) or below and the freezer at 0° F (-18° C). Place a refrigerator thermometer in the refrigerator, and check the temperature periodically. During the automatic defrost cycle, the temperature may temporarily register slightly higher than 40° F. This is okay.
Refrigerate or freeze perishables, prepared food, and leftovers within two hours of eating or preparation. Follow the 2-Hour Rule: Discard food that’s left out at room temperature for longer than 2 hours. When temperatures are above 90° F (32° C), discard food after 1 hour.
Use ready-to-eat, perishable foods, such as dairy, meat, poultry, seafood, and produce, as soon as possible.
Fridge TIPS
Clean your refrigerator regularly.
Wipe up spills immediately. (Have antibacterial wipes on hand or antibacterial surface spray.
Clean the inside walls and shelves with hot water and a mild liquid dishwashing detergent; then rinse. (I always use fairy antibacterial with a red cross washing up liquid.
Once a week, check expiration and “use by” dates; and throw out foods if the date has passed. Follow the recommended storage times for foods.
Remember to store raw meat on the bottom shelf and cooked meats on the top/middle.
I suffer from Multiple Sclerosis. My mum is my carer and also the editor of this website.
I have good days and bad days and my legs ache and I am tired most of the time. I have had my medication of Gabapentin increased because I cannot cope with the pain.
I had my annual MRI scan done earlier this year and it was observed I have new lesions on my brain.
The professor of neurology has decided because I have relapsed, that I have to have a new course of treatment which should start in the next couple of weeks followed by a course of steroids to shut down my immune system and then the infusion. Because of Covid, I cannot have visitors so will be stuck on the ward by myself.
I have already got my stash of snacks, biscuits, chocolates, sweets, etc. I’m not a fan of hospital food and it is not as if they will let me go to the hospital shops with my drip in tow.
I now have to have stricter screening because of the potential risks and side effects, which I assume is for the NHS benefit to cover their backs I suppose.
I often get MS hugs that feel paralyzing. I have been experiencing sharp and dull headaches, but I guess that is from my lesions. I even have a pineal gland cyst lesion so it is (confirmed I have a third eye) lol, I am a spiritual being.
Like I said before no two days are the same. Depending on how stressed I am will depend on how my day pans out. I do suffer from depression from time to time and I do worry. Although this is not diagnosed I do recognize the symptoms. I do get very upset sometimes and I do try and stay focused and occupy my mind with something from keeping the intrusive thoughts creeping in.
Stress & Studies.
I cannot cope with stress, I experience anxiety and it gets very overwhelming to the point my hands tremble. I have in the past hurled my old Acer computer across the room with rage. I am hot-headed and cannot cope well with stress and problems so I am grateful I have my mum as my carer because she told me she received a letter from the DWP today and this is how long she was on the phone waiting to be put through before she could speak a total of fewer than 6 minutes. If this was me I would have smashed my phone to pieces.
Several studies have shown that stressful life events are associated with a subsequent significant increase in the risk of “Multiple Sclerosis” (MS) exacerbations.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3115807/
“So it does not help when people and organizations cause me immense anxiety and stress, which then escalates into depression”.
Timeline.
My timeline of things that have happened to me although I do not always remember to document everything are:
27th September 2021.
I noticed bruising on my foot. I am very vigilant when it comes to bruising as I have been told that Alemtuzumab can cause Immune Thrombocytopenic Purpura (ITP). Immune thrombocytopenic purpura (ITP) Formerly known as idiopathic thrombocytopenic purpura is a blood disorder characterized by a decrease in the number of platelets in the blood. Platelets are cells in the blood that help stop bleeding. A decrease in platelets can cause easy bruising, bleeding gums, and internal bleeding. In severe cases treatment may include medications to boost your platelet count or surgery to remove your spleen. https://www.mayoclinic.org/diseases-conditions/idiopathic-thrombocytopenic-purpura/symptoms-causes/syc-20352325
22nd December 2021.
I developed a random rash on my face, I did not eat or use any new products it just came out of nowhere. I wonder if I will develop a rash as I had it last time, it looks like hives and you get it all over your body. Mine lasted a day, thank God.
15th April 2022
My lip started to swell and I had bleeding inside my mouth. As you can see from the photo it then turns all blistery. I took some antihistamines and after a few days it settled down. I did go to Boots pharmacy and they confirmed it was not a cold sore but an allergic reaction, again I never took anything out of the ordinary, any new skin or bath, detergent products, and no new food, weird?
21st April 2022.
I slipped in the bath and ended up bruising my lower torso. It was painful for a few days but it healed relatively quickly.
26th April 2022.
I noticed bruising large reddish-purple bruising on my inner thigh towards my knee, again very random.
20th April 2022.
I received a letter that I had to come into the hospital to have my blood (7 vials) and sign the consent form to have the treatment.
So in a couple of weeks’ time, I will be starting the treatment which I am not looking forward to because I will be immune suppressed so won’t be able to go anywhere public for a few after that, but I should be used to it by now from past experience of previous treatment and the Covid Lockdowns.
Update 17/05/22.
I am having an ongoing issue with Cardiff Bus Concessionary Travel Card. I was issued a card that would last me for some time and out of the blue, they are insisting on my up-to-date award letter which is still being processed, giving me a deadline of 8 weeks to produce it.
My mum who is my carer phoned PIP today to get confirmation and they said they have extended the award until September 6th with 3-month reviews, the assessment is still pending but PIP(Personal Independence Payment) did agree to send out a letter as proof of the conversation. I hope that the Cardiff Bus Company aka Cardiff Council does not make it difficult for meas I do not want my MS to get worse.
PIP has assessors who are not qualified as I have a friend who is one, so I personally think and so does my mother that all applications should be assessed on the basis of the medical recordsand health professionals’ opinions and not by someone off the dole register.
Mr. Tibbles The Health Cat Reporter – Supporting Young Minds
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