Disability UK Online Health Journal - All In One Business In A Box - Forum - Business Directory - Useful Resources

Category: Autoimmune Disease (Page 3 of 3)

Zena’s Online Journal MS Journey

Girl with Black Cat Drawing

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:



BOOTS LOGO

#multiplesclerosis #ms #neurology #nhs #gp #tfw #onlinejournal #zenasonlinejournal

Bus Passes For The Disabled.

Bus Passes For The Disabled.

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 local Citizens Advice which 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.

Follow the steps on GOV.UK to apply.

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.

You can find out more about Dial-a-ride on the TfL website.

If you are refused a bus pass.

You can appeal to your council if your bus pass application was refused. Check your council’s website to find out how to appeal.

You can also visit your nearest Citizens Advice – an adviser will discuss your options.

Other help you can get.

If you are on a higher disability rate you may also be able to apply for a car, mobility scooter, or powered wheelchair.

If you’re eligible for a bus or rail pass, you might also be able to get:

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/disabled There 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.

Cardiff Council email address: travelcards@tfw.wales

Cardiff Council phone number: 03003 034 240 Monday to Friday: 09:00 – 17:00

Evidence shows that stress can be a contributing factor to causing relapses in Multiple Sclerosis patients, which can have a bidirectional relationship.

UPDATE 05/07/22

Email Received 05/07/22

Email Content.

Hope you are well.  

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.

https://www.everydayhealth.com/hs/living-better-with-ms-guide/triggers-that-can-cause-ms-flares/

https://disabledentrepreneur.uk/zenas-online-journal-alemtuzumab/

“If it is found that my daughter relapses again because of the stress this is causing her, somebody should be held responsible”.

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.

My Daughters’ PIP Test States She Has 15 -19 Points: https://disabledentrepreneur.uk/zenas-pip-self-test/ contrary to her last assessment that was done a few years ago and since then she has relapsed twice and has just finished treatment. https://disabledentrepreneur.uk/zenas-online-journal-alemtuzumab/

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:

#disabilitybuspass #discretionerybuspass #freebuspass #buspass #mobility #transportforwales #multiplesclerosisstress #multiplesclerosis #MS #multiplesclerosisresplapse

How Safe Are Smart Meters For Your Health?

How Safe Are Smart Meters For Your Health?

WHAT IS A SMART METER?

A smart meter is the next generation of a gas and electricity meter.

They are being installed in homes across Great Britain at no extra cost, to replace the traditional meters including prepay key meters, which most of us currently have tucked away under the stairs, or outside our homes.

Theoretically, smart meters measure how much gas and electricity you’re using, as well as what it’s costing you, and display this on a handy in-home display. The smart meter, also called an Advanced Meter Installation (AMI), is a two-way device used by utility companies to measure energy usage in your home.

HOW DO THEY WORK?

The advantage of a smart meter is you can wave goodbye to estimated billing. The smart meter shows a digital meter reading and uses a secure smart data network (managed by the DCC) to automatically and wirelessly send the readings to your energy supplier at least once a month, so you will receive accurate, not estimated bills.

Smart meters also come with an in-home display screen that shows you exactly how much energy you’re using in pounds and pence, in near real-time.

WHAT THE UTILITY COMPANIES SAY.

If you ask your utility company if a smart meter impacts your health, you’ll likely be told there is no health risk. They will be biased and will hopefully convince the unaware consumer that there are no dangers. However medical evidence has proven there are dangers.

WHAT THE EXPERTS SAY.


According to the BioInitiative Working Group, more than 6,000 studies show the correlation of electromagnetic energy with harmful effects, chronic conditions, and disease.

There is also evidence that electropollution triggers an immune system response. That’s because the body thinks the electrical fields are foreign invaders similar to bacteria and viruses.

Amy Myers, MD is a two-time New York Times bestselling author and an internationally acclaimed functional medicine physician. Dr. Myers specializes in empowering those with autoimmune, thyroid, and digestive issues to reverse their conditions and take back their health.

Amy Myers is a successful founder and CEO of Amy Myers MD®.

Dr. Myers has been quoted as saying: “I’ve seen with thousands of patients in my functional medicine clinic, that chronic inflammation leads to fatigue, cognitive problems, brain fog, irritability, anxiety, and memory loss. It is the root cause of autoimmune disease. Chronic electrical exposure triggers symptoms that mirror those experienced in dozens of autoimmune diseases”.



According to David O. Carpenter, MD, radiofrequency exposure at elevated levels for a long period increases the risk of cancer, damages the nervous system, and causes sensitivity. It also has adverse health effects on the reproductive system and other organ systems. In addition, it elevates the levels of peroxynitrite (a toxin made by your body), which is linked with over 60 chronic diseases. 

According to the World Health Organization, tissue heating is the principal mechanism of interaction between radiofrequency energy and the human body. Sam Milham, MD has spent nearly thirty years researching the impact of electric and magnetic fields (EMFs). He links dirty electricity to cancer, heart disease, diabetes, Alzheimer’s, and suicide. He also connects it with neurological disorders such as multiple sclerosis and Lou Gehrig’s disease.

RF radiation was classified in 2011 by the International Agency for Research on Cancer (IARC), as “possibly carcinogenic (cancer-causing) to humans.” Furthermore, no data shows RF radiation is safe. No one has conducted health studies on humans living in homes with smart meters. The World Health Organization is planning a formal assessment of the health effects of RF exposure, however, this report is not yet available. 

“People with smart meters in their homes have reported a sudden increase in dizziness, ear pain, memory problems, heart palpitations, anxiety, and sleep problems”.

CORPORATE BULLYING

Whether you owe money to a creditor or a utility company they will not stop until you contact them. They have been known to text and phone multiple times in a day for you to react. It is always best to communicate with them so that they can arrange something with you. My interaction was with Utility Companies and they insisted on meter readings, before Covid, and even During Covid they would come and read my meter but now they are singing a different tune. Because of the height of where my meter is located, it is impossible to read, yet I do not want a smart meter because of the health implications.

Whenever I communicate I always forward articles I have written, this gives me more authority on what I am talking about.

FURTHER READING.

https://www.amymyersmd.com/article/dangerous-smart-meter/

https://disabledentrepreneur.uk/cost-of-living-and-the-impact-on-struggling-low-income-families-entrepreneurs/

Learn about Deficit Spending and the Debt Ceiling by watching “The Hidden Secrets of Money” by Mike Maloney To Know Why ‘Our Utility Prices’ have been hiked and how utility companies will bully you into having ‘SMART METERS’!

Courtesy of Mike Maloney, Ron Paul, Steve Forbes, Stayed Tuned To The Very End After The Credits.

NOTES FROM THE EDITOR.

I had a text message come through on my phone from ‘British Gas despite me telling them that I do not permit them to communicate with me this way and only by email. So they have given my number out without my permission to third-party engineers, which is a breach of GDPR for starters.

This has gone on deaf ears. Needless to say, they have booked me in for a smart meter even though I have told them I do not want one.

Now both my daughter and I have autoimmune disorders (cerebellar atrophy and multiple sclerosis), so if any utility company insists on the installation of these meters I think I have enough evidence, that should either my daughter or I relapse, we would be able to take legal action against the energy providers.

I was told in a conversation I had with ‘British Gas that I use more gas than the average household. They even asked me to add a backlink for them on this site on the useful links page, yet they never offered to pay for it. (It is disgraceful that they can money grab, but won’t compensate for the traffic I send them). The link is useful for my readers and I am not doing British Gas any favors and will be looking for compensation.

I am not arguing if I use more gas or not, although I have a brand new boiler and I have to have my home heated because of black mold that grows on our walls.

I have to safeguard both my daughters and my health because we have black mold.

Our landlord is aware of the situation and has simply said to wash it down with bleach and soapy water. This does not eradicate the problem and the health of my daughter and my own is paramount and I will fight to the end anyone that tries to reduce our quality of life.

They will be made accountable, this includes:

  • Emotional Distress
  • Stress
  • Anxiety
  • Depression
  • Autoimmune Relapses


Preventing Mold.

Preventing mold through heating. It makes sense that people want to save on heating costs but one of the best mold prevention techniques is keeping your heating on. If you seriously want to avoid mold in your home then avoid rooms cooling completely.

https://www.viessmann.co.uk/heating-advice/6-mold-prevention-tips-for-a-healthy-home

Remember the Governments and the Large Corporations work hand in hand. If you read on the government’s website that smart meters are safe, they will never tell the truth.

Why is our cost of living increased?

I will tell you why it has to do with deficit spending and the debt ceiling. The Government has overspent and in the case of the UK, they owe money to the EU. The Brexit Divorce Bill in July 2021, was estimated at £40.8bn but Downing Street insisted the figure was between £35bn and £39bn. https://www.bbc.co.uk/news/51110096 We now have a crisis on our hands. The Government needs to find the money to pay the EU. Goods and services are now subject to tariffs, increasing the cost of raw materials into Britain and finished products out.

https://disabledentrepreneur.uk/cost-of-living-and-the-impact-on-struggling-low-income-families-entrepreneurs/

Therefore who is paying for this if not the British Public?

https://corporatefinanceinstitute.com/resources/knowledge/economics/brexit/

Health.

If people’s mental health is affected due to price hikes and people are forced to endure corporate bullying and intimidation to install smart meters which leads to illness then the corporations need to be made accountable. If people are struggling to pay their finances before the price hikes how are they supposed to pay after bills are increased exponentially?

“Pushing vulnerable people into a corner can easily send them over the edge”.

Furthermore, if corporations interfere in with people’s quality of life and make them ill they should pay damages. Black mold could lead to death. https://www.ehagroup.com/mold-iaq-services/toxic-mold/ So if I am to not use my gas and the black mold makes us ill then ‘British Gas’ should be made to pay for damages.

Creditors

Smart Meter Bullying

https://www.thisismoney.co.uk/money/bills/article-6584597/Energy-suppliers-bullying-customers-smart-meters.html

Useful Links

https://disabledentrepreneur.uk/useful-links-2/

Support

Anyone who has noticed ill health after having a smart meter or has been bullied by creditors can reach out to us by using the form below.

Together We Are Stronger!

#smartmeters #smartmeterdangers #utilitycompanies #britishgas #eonnpower #autoimmunedisease #radiation #radiowaves


Blue Butterfly
Newer posts »