I am a 20-year-old female that is about to start University in September 2021 and I suffer from ‘Multiple Sclerosis’. I live at home with my mum and my MS cat called ‘Tibbles’.
My mum read online when I was first diagnosed with MS that cats can be good for therapy. My cat is my faithful companion and is super loyal to me as I was the one that brought him up and litter trained him. He follows me everywhere and sleeps with me.
I am always feeling tired, I always try to get a good 8 hours sleep but I do not know what it is called but my legs feel so heavy and I find it difficult to get into a comfortable position (not sure if that is restless leg syndrome or not)?
My legs ache and my neurologist told me to double up on my ‘Gabapentin’ but the ‘Gabapentin’ also makes me feel zonked out. I cannot concentrate if I feel zombified. I cannot win.
“I have to be super alert for my studying”. I cannot afford to feel drowsy during lessons.
Whenever I travel anywhere I always catch an Uber (hospital appointments). My mum used to come with me until the pandemic started and only one person was allowed in, so it was not worth my mum coming with me.
I do not like public transport especially because of ‘Covid’and not being able to keep a safe distance from anyone, let alone the walking and standing to catch a bus, my legs cannot handle it.
My mum is my carer and helps with my shopping. She does her best to cook because although I do like cooking I cannot stand for long lengths of time, so my mum has no option but to cook for me.
I would like to lead a normal life but my household is by far from normal. My mum suffers from OCD so we are as bad as one another.
No two days are ever the same, I have good days where I do not feel sad and depressed and other days where I just want to stay in bed all day. My health is not perfect and I am starting to learn to adapt to my disabilities. As an example, I have had cataract surgery and have to have my driving license reviewed every 3 years.
I feel sad life has dealt me this card but it could have been much worse so I have to stay optimistic and you never know scientists may find a cure for it someday.
My mum had a couple of suction bathoom grab bars fitted to help with getting out of the bath.
I do have really bad days and feel extremely sad and cry for no reason. I can thank my mum for being there to put a smile on my face and cheer me up, she is like a counselor to me and motivates me.
I have noticed I have gained weight. I cannot exercise like walking for example because my legs hurt.
I do try and maintain a healthy diet but I think my medication is somewhat to blame for my weight gain (contraceptive pill).
Amongst my knowledge of OCD and Cerebellar Atrophy I have been thrown into the deep end with Multiple Sclerosis. The reason for this, my daughter was diagonosed with it at the age of 15. It was a shock to the system for the both of us to learn about the disease, the diagnosis and what treatments there were and what are available.
I had concerns when I read that the treatment was still going ahead even though European Medicine Agency (EMA) had taken it off the market. The hospital and EMA said that no new patients would be having to drug but the patients already on it would have to finish the course.
I personally think there was political red tape and that is the reason the drug had to be continued with existing patients as it cost too much and was too complicated to get a refund, I may be wrong but no one has stepped up to correct me. If the drug had been bought upfront you could not exactly get your money back I suppose. I do not know how buying drug work, but I assume pharmaceutical companies get paid upfront as they have to make large batches, with expiry dates hence the NHS cannot return drugs once they have been manufactured in large quantities.
Lemtrada suppresses the immune system for some time after a treatment course so people will be more vulnerable to infections such as colds and viruses.
LEMTRADA can cause serious side effects including:
Serious autoimmune problems:
Some people receiving LEMTRADA develop a condition where the immune cells in your body attack other cells or organs in the body (autoimmunity), which can be serious and may cause death.
Serious autoimmune problems may include:
Immune thrombocytopenic purpura (ITP), a condition of reduced platelet counts in your blood that can cause severe bleeding that may cause life‑threatening problems.
Call your healthcare provider (HCP) right away if you have any of the following symptoms: easy bruising; bleeding from a cut that is hard to stop; coughing up blood; heavier menstrual periods than normal; bleeding from your gums or nose that is new or takes longer than usual to stop; small, scattered spots on your skin that are red, pink, or purple
Kidney problems called anti‑glomerular basement membrane disease, which, if not treated, can lead to severe kidney damage, kidney failure that needs dialysis, a kidney transplant, or death.
Call your HCP right away if you have any of the following symptoms: swelling of your legs or feet; blood in the urine (red or tea‑colored urine); decrease in urine; fatigue; coughing up blood.
So its no suprise thatOn July 3, 2020 Sanofi Genzymewas notified that Lemtrada Home Phlebotomy Partner, Examination Management Services Inc., (EMSI) has gone out of business.
Because of this, unfortunately, all future Lemtrada Home Phlebotomy (lab draw) visits from EMSI have been cancelled.
Patient safety is Sanofi Genzyme’s #1 priority (thats a joke if I ever heard one as my daughter was still administerd the drug after the EMA said it was unsafe) and they continued to say they are working to provide an alternative phlebotomy solution as well as coordinate alternative testing options for your next monthly lab tests.
This tells me that the company had to do refunds and the NHS here in the UK were slow and had already paid the doctors.
I wrote an article on my other blog how Doctors get a commission from pharmaceutical companies for promoting drugs.
You can read the article here:
Doctors receiving money from pharmaceutical companies.
I personally think when I first learned about this, that I was angry that the NHS knew the risk, yet used my daughter as a lab rat.
If you have any questions related to this announcement, please contact your healthcare provider or your One to One Nurse at (USA) 1-855-557-2483.
If you are in the UK contact your MS Team, or speak to the Ward Manager or Professor assigned to your case.
Multiple sclerosis (MS)
Multiple Sclerosis is an auto-immune disease that attacks healthy white cells. The lesions that can affect the brain and spinal cord can cause a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance.
It is an incurable disease with lifelong symptoms that can sometimes cause serious disability, although it can occasionally be mild.
The average life expectancy is slightly reduced for people with MS and symptons can be alliviated with different courses of treatments.
In most cases, people get diagnosed in their 20s or 30s but it has been known the patients have shown symptoms as young as 15 years of age. In fact, it can develop at any age. It’s about 2 to 3 times more common in women than men.
MS is one of the most common causes of disability in younger adults.
Cerebellar atrophy is associated with MS and is more extensive in patients with secondary progressive MS and those with longer disease duration when compared with people who have relapsing–remitting (RR) MS and/or shorter disease duration. Cerebellar atrophy has been shown to correlate with clinical measures of disability.
Multiple sclerosis (MS) commonly affects the cerebellum causing acute and chronic symptoms. Cerebellar signs contribute significantly to clinical disability, and symptoms such as tremor, ataxia, and dysarthria are particularly difficult to treat.
This post is a mixture of two posts rolled into one (no pun intended).
The First Being Logistics.
The Second About Disabilities.
History of Royal Mail was originally established in 1516 as a department by the Royal Family. The company’s subsidiary company Royal Mail Group Limited operates the brands Royal Mail (letters) and Parcelforce Worldwide (parcels).
The company provides mail collection and delivery services throughout the UK and is now a private company after it’s shares where floated on the stock exchange in 2015.
Now my grievance is that such a big company has no online chat and if one wanted to lodge a complaint this is what they say “We are currently experiencing very high call volumes”, this tells me their service is not up to scratch and they have not employed enough people to deal with the demand and are delivering poor service. The response time is between 10 and 35 days.
For people with mental health and immune disorders, this is absolutely unacceptable.
Employ more staff or give up your yearly bonuses and have a cut in salary meaning salaries from the top and that way you will be able to afford to employ more people.
Just because you are a PLC company there have been many before you which have tried and failed in our current climate with businesses going bust left right and centre.
You have to stay ahead of your competion, you need to dig deep into your pockets to survive.
Furthermore their website is not straight forward to navigate and I should know as I build websites.
“There should be no room for error”.
Any decent company should have online chat.
So this is the domino effect of a company simply not doing their jobs properly as I will explain:
Two parcels were sent on 12/01/21 from the same Royal Mail Post Office, one to ‘Amazon’ and the other to ‘Pretty Little Thing’. The Amazon notification came within 24 hours and refund within 48 hours but for ‘Pretty Little Thing’ the parcel is still in the sorting office even though ‘Royal Mail’ aims to deliver in one working day.
Now considering there is a time frame for when things can be returned and my daughter’s return date is bordering on the deadline, you would think they would speed things along.
My daughter who suffers with Multiple Scleroris is on the verge of having a relapse because of ‘Royal Mail’.
Multiple Sclerosis can leave a person wheelchair or bed bound, so as her carer I think it is only right to ruffle a few feathers.
To think before Christmas someone refused to use Royal Mail to send a fragile gift and I tried defending the company I now have egg on my face, and so has my daughter.
Unless the company can up with a quick plan of action I will not be saying a good word about this company.
Weak Bladder Problems,Things We Don’t talk About Because Its Too Embarrassing.
Control Your Bladder Before It Controls You.
As we get older things happen to our bodies that sometimes are very embarrassing to talk about, especially to our friends and our families. It is not always about ones age that can cause us to have weak bladders it could be a number of things and half the female population will experience urinary incontinence at some point in their lives. Stastistics have shown that women are 5 times more likelier to develop bladder problems than men and 1 if 5 women will seek help and go to their GP’s. The age range is about 6% of women between 15 to 44 experience incontinence issues whilst the statistics show 10% of men over 65 to have urinary incontinence to some degree. Studies have shown that in the UK “major faecal incontinence” affects 1.4% of the general population over 40 years old.
However experiencing public humiliation can be avoided if you train your bladder. Have you been in a situation you have coughed or laughed and trickled (now you know where the term comes from “I nearly peed myself laughing” comes from).
Or have had to make a mad dash to the toilet rugby tackling people along the way. What ever the scenario, there are things that you can do to make your life a little less embarrassing without leaving tell tale wet patches around.
We can mock all we want but it is no laughing matter especially when it happens to the best of us. We are human after all.
The causes of embarrasiing problems include weak bladder which I will focus on today but there are other symptoms to do with mental health that people have a hard time talking about, which I will address in another post.
Weak bladder can be caused by the following:
Drinking too much alcohol or caffeine (tea/coffee) or energy drinks. (I am guilty of this).
Not drinking enough fluids such as water – this can cause strong, concentrated urine to collect in your bladder, which can irritate the bladder and cause symptoms of overactivity and cystisis.
If you are not going regularly for a No2 and you find your are constipated.
Infections and underling conditions affecting the lower urinary tract (urethra and bladder) – such as urinary tract infections (UTIs) or tumours in the bladder.
Neurological conditions such as Multiple Sclerosis or Parkinsons Disease.
Natural Childbith where your pelvic floor may be weak.
Certain medicines such as angiotensin converting enzyme (ACE) inhibitors, diuretic, antidepressants, hormone replacement therapy (HRT), sedatives. (My medications can also be a factor of me having a weak bladder)
Increased pressure on your tummy – for example, being heavily pregnant or over weight. (I am definitely overweight as working from home limits how much excersise I do which at the moment is virtually non existent, plus the fact I am social distancing myself from everyone because of my OCD beliefs and cross contamination).
Damage to the bladder or nearby area during surgery – such as the removal of the womb (hysterectomy), or removal of the prostate gland.
Connective tissue disorders such as Ehlers-Danlos syndrome.
Having a poor diet eating, spicy or acidic foods.
The best way to combat incontinence is to change our lifestyles and take better care of our bodies, starting with perlvic floor exercises and changing our diets. But that means discipline as nothing happens overnight.
We can also do some jogging either out and about or on a tread mill and aerobics, with strengthening exercise, such as pilates. There are plenty YouTube Videos you can find and adapt. Also avoid lifting heavy things as this will effect your pelvic floor and add further uneccessary strain.
There are non surgical aids one can use to counteract a weak bladder from incontinece pads to supplements.
Absorbent products, such as pants, pads or pany liners can save you from some embarrassing moments when you simply cannot control your bladder long enough to get to the bathroom or handheld urinals, which are not ideal especially if you are caught out and about, like where can you discretly have a pee, you can’t?, unless you are maybe in you car or out on some country road where you could always take advantage of the bushes.
My brother said he once was caught short on the motorway in non moving traffic and was forced to pee in a coke bottle. Not so easy for women though. My mother had to make service pit stops at every junction when she used to go on longer journeys. For me my bladder gives me no warning at all and I have to do my wriggle dance long enough to run to the toilet which happens to be like clockwork every two hours hence I never get a full eight hours beauty sleep. Its not as if I can time it one minute im ok and the next minute I am desperate.
I have recommended some incontinence supplements and aids below:
Regardless of your age you should never be too embarrassed to say that you have a bladder problem and if you cannot manage it yourself you may need to get some medical advice and see what options are available for you.
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