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 is an MS Warrior.
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 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’ are 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 actually wrote an article regarding bus passes and is waiting on 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 bloods 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.
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.
In order 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.
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.
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:
Typically caused by Aspergillus, but can also be caused by other types of mold, such as mucormycosis
Difficult to diagnose
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:
Shortness of breath
Dark scabs, blisters, or ulcers on the skin
Skin Problems such as eczema
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.
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.
Symptoms of listeriosis
In most people, listeriosis has no symptoms or only causes mild symptoms for a few days, such as:
a high temperature of 38C or above
aches and pains
feeling or being sick
If you’re pregnant, you may also have a stomach ache or notice your baby moving less than usual.
Babies with listeriosis may also be irritable and feed less than usual.
Risks of listeriosis
Listeriosis is not usually serious for most people.
But some people have a higher risk of serious problems, including:
people who are pregnant
people aged 65 or over
people with a condition that weakens their immune system, such as cancer, liver disease, or kidney disease
people having treatment that weakens their immune system, such as chemotherapy or steroid tablets
people with diabetes who are unable to keep their blood sugar level down, even with treatment (uncontrolled diabetes)
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.
“So it does not help when people and organizations cause me immense anxiety and stress, which then escalates into depression”.
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.
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.
This Post Is To Mark The Birthday Celebrations Of My Daughter’s MS Therapy Cat “Tibbles” On The 13th of May2018.
When we first found out my daughter was diagnosed with MS (Multiple Sclerosis) I started to research as you do on Google and had a few sites recommending a therapy cat. By coincidence, my daughter knew someone selling a kitten and pleaded with me to have one.
I was hesitant at first as I never owned a cat before and did not know the first thing about looking after one. Being soft I agreed so that my daughter could adopt it. She named him Tibbles or Tibbs for short and he arrived a little black fur ball only a few weeks old.
Yes he is black and he was born on the 13th but then again so was I.
It is Friday the 13th tomorrow and I consider that a good omen. He is our lucky cat.
He can hardly be called a therapy cat he can be a little monster at times but for the most part, he is well behaved. He loves catnip and will only eat off bone china plates. Only the best for our Tibbles.
He is not comfortable around strangers and tends to hide if we have visitors. He occasionally loves to do a sprint of 30 miles per hour and has been known to climb our walls and curtains. He also can play fetch, seriously now if you throw a little scruntched-up ball of paper he will bring it back to you.
He has a unique personality and has an attitude going as far as back chatting, not that we understand anything he is meowing.
Now that we have got him he is now part of the family.
I just thought he will be the reason why I won’t be able to travel this Christmas (yeah) as I will have to look after him purr-fect planning.
Happy Birthday, Tibbs, you are now internet famousxx.
Necessary cookies are absolutely essential for the website to function properly. This category only includes cookies that ensures basic functionalities and security features of the website. These cookies do not store any personal information.
Any cookies that may not be particularly necessary for the website to function and is used specifically to collect user personal data via analytics, ads, other embedded contents are termed as non-necessary cookies. It is mandatory to procure user consent prior to running these cookies on your website.