Wednesday, 18 December 2019

Mal's Medical Situations

Mal's Medical Situations
NOTE: This post is not a "pity-party/woe-is-me" thing, as I'm simply sharing a very brief insight into some of the reasons as to why I may act so "up-and-down" from time to time.
NOTE: All of this is all quite frustrating for me, as I was always quite well health-wise overall, until my mid-40's! (I'm 54 now).
Blimey... I don't drink, don't smoke, don't do drugs, nor video games!
I guess the 'joys' of a life-time lived with stress, anxiety, and depression has caught up with my physical health!

(a) Mild Multiple Sclerosis (MS)
23 January 2017
I had my second visit with my neurologist. I have been diagnosed with mild MS (or "Multiple Sclerosis"). At this stage, it is thought that I have what is called mild "Relapsing-remitting (RRMS*)".

STOP! DON'T PANIC! And DON'T Google it!

So... what does this actually mean?

I mainly suffer from numbness/tingling/pins-and-needles in my hands (amongst other things). This will randomly come and go over my lifetime.

It's not painful (thankfully), nor is it a loss of muscle strength, grip, nor motor skills... it's more like a loss of sensation/touch in my fingers/hands.

Try picking-up a wet cake of soap whilst wearing a wet plastic oven-mitt - you get the idea. That's about the best way to describe how my MS affects my hands.

NB. Click here for ALL my OTHER MS symptoms, too.

Yes, I can still look after myself, drive... somedays, typing/using a mouse can be a challenge as well, as can be writing-by-hand. Playing guitar is a part-time "as-I-am-able-to" thing for me, now, sadly.

My MS also slightly affects my left foot, sometimes making me 'roll' a bit when I walk. I'm using a walking stick & walker, to help my wonky sense-of-balance. My days of either being bare-foot, or wearing just thongs/flip-flops (when I'm out), are now past.

It's all very frustrating, but I'm not depressed or unsettled by it all, to be honest. That does surprise me, but I'm fully aware that there are people with this condition who have it a LOT worse off than I ever will!

Oh! I most certainly have NOT lost my fun warpo sense of random absudist humour, either, thank goodness!

I'm fully aware that a lot of people will not know how to react or what to say, when they hear this news from me. That's OK... I appreciate that everyone has different ways of dealing with information like this. But please keep in regular contact with me... I honestly need that from you, OK? Thanks.

But, what is MS?
Please watch this - thanks.

(Here's the other clip they are referring to: )

MS is a nervous system disease, where my own immune system attacks the protective covering ("myelin") of tiny parts of my spinal cord (ie."Demyelinating disease"). The name "Multiple Sclerosis" refers to scars - in particular in the white matter of the brain and spinal cord. Mine are mainly in my neck, and tiny fragments in the brain (seeing my MRI scan results was amazing!) The resulting 'scaring' disrupts the way my nerves work, sending confused messages - in my case, numbness/pins-and-needles to my hands (and possibly other parts of my body from time-to-time).

It's like the protective coating ("sheath") around little parts of my spinal cord (in my neck) have come away slightly, sending some of the nerve messages to my hands/fingers astray.

The relapsing-remitting ('RRMS'*) is characterized by unpredictable relapses followed by periods of months to years of relative quiet (remission) with no new signs of disease activity.

It's similar (but not related to) what has been happening in my bowel (cf. below): as an auto-immune disease of unknown/non-contagious origin, it's like the fluid around my spine slowly started attacking the spinal nerve.

Yes... my exact set of conditions are quite rare! Trust me! D'oh!

With MS, everyone is affected differently.

It's not known was causes MS.

There isn't currently a cure for MS, but it is possible to manage it with various treatments that can reduce symptoms, relapses and the diseases' progression, with the help of my neurologist & associated health team. (Oh... lots of Vitamin D helps, too!)

MS won't necessarily affect the length of my life, but it will affect aspects of the quality of my life.

All of this is all quite frustrating for me, as I was always quite well health-wise overall, until my mid-40's! (I'm 52 now). I guess the 'joys' of a life-time lived with stress, anxiety, and depression has caught up with my physical health!

More info about MS: (PS. Don't use 'Dr Google')!

MS Information & Resources

Be MS Aware
Some MS Facts
Some Common MS Misconceptions

My own personal MS journey (blog)

(b) Ulcerative Colitis (UC)

I have been diagnosed as having a chronic (ie. life-long) auto-immune disease called uUlcerative colitis ("UC")... it means that I often can't get to the lavatory in time (and I don't mean peeing here!)
As an auto-immune disease of my colon, basically it's as if my own bowel is attacking itself. Specific diets and/or medication help bring me relief, but aren't a cure - there isn't one, just maintenance and containment/control.

I'd been 'living with it' for about 10-15 years, and wasn't properly diagnosed until 2012.

Ulcerative colitis (Colitis ulcerosa) is a form of inflammatory bowel disease (IBD). UC is a form of colitis, a disease of the intestine, specifically the lining of the large intestine or colon/bowel, that includes characteristic ulcers, inflamed or open sores, in the colon, which may bleed. (It's like that the lining of my colon, instead of being smooth, looks like sandpaper).

UC - a few facts (click).

The main symptom of active disease is usually diarrhea mixed with blood, which often leads to anemia. Ulcerative colitis is, however, a systemic disease that affects many parts of the body outside the intestine. (IBD is often confused with irritable bowel syndrome (IBS), a troublesome, but much less serious, condition).

I have what is called "Pancolitis", which involves my entire colon.

There are no direct known causes for ulcerative colitis, and it is not contagious.

While it won't necessarily kill me, the disease primarily affects quality of life and not lifespan.

It is hard for people to understand when I explain the condition I have been dealt with. I may look like a healthy person on the outside, but what they don't know is the serious medical condition on the inside, and need to take care of myself. There are times when I get frustrated wishing things were different, but I believe my condition has made me understand life in a different perspective. I do not take anything for granted and appreciate the little things in life. I laugh a lot, now.

Although ulcerative colitis has no known cause, there is a presumed genetic component to susceptibility. The disease may be triggered by environmental factors. Although dietary modification may reduce the discomfort of a person with the disease, UC is not thought to be caused by dietary factors. Although there is no clinical evidence to suggest that specialist diets benefit persons with UC, good nutrition is essential to the healing process. When disease is active, many people lose their appetite or try to avoid eating in order to prevent further symptoms. Lack of adequate nutrition worsens the tiredness and fatigue and eventually leads to weight loss. 

Ulcerative colitis is treated as an autoimmune disease. Treatment is with anti-inflammatory drugs, immunosuppression, and biological therapy targeting specific components of the immune response.

There is no known cure - just maintenance-control.

The inflamed lining also produces a larger than normal amount of intestinal lubricant or mucus which sometimes contain pus. Inflammation in the colon reduces its ability to reabsorb fluid from the feces which causes diarrhea. Inflammation in the rectum can lead to a sense of urgency to have a bowel movement.

The disease may be accompanied with different degrees of abdominal pain, from mild discomfort to painful bowel movements or painful abdominal cramping with bowel movements.

The chronic loss of blood from the GI tract leads to increased rates of anemia, which is causing me much fatigue, sometimes leads to brief dizzy spells, and affects my energy levels.

As ulcerative colitis is believed to have a systemic (i.e., autoimmune) origin, it sometimes also affects my mouth with ulcers, and sometimes foot cramps.

Standard treatment for UC depends on extent and disease severity. The goal is to (i) induce remission initially with medications, followed by the administration of (ii) maintenance medications to prevent a relapse of the disease. The medications used to induce and maintain a remission somewhat overlap, but the treatments are different. Physicians first direct treatment to inducing a remission which involves relief of symptoms and mucosal healing of the lining of the colon, and then longer term treatment to maintain the remission and prevent complications.

I am currently using mercaptopurine (Purinethol) and mesalamine (Pentasa) to help keep my UC stable - and it's working well.

Previously, my Ulcerative colitis was being treated with a number of medications including sulfasalazine, mercaptopurine (Purinethol) and prednisone, as well as Iron supplements Vitamin C (for my anemia). 

Most research points that a particular diet has nothing to do with it at all - good overall nutrition is more important. I am currently trying to eat a gluten/dairy/sugar-free diet.... note the word 'trying'!

Note: a lot of trying to find "what works" for me is trial-and-error... and it is different for everyone who suffers from UC... there is no "one" overall "way" which helps more than another.
Patients with ulcerative colitis usually have an intermittent course, with periods of disease inactivity alternating with "flares" of disease.

There is a significantly increased risk of colon/bowel cancer in patients with ulcerative colitis.

People generally experience a psychological adjustment when diagnosed with a chronic medical condition. Symptoms of anxiety and depression are common. People often feel a sense of loss and grief that everything is not functioning as well as it had previously. There are associated fears about long-term prognosis. When diagnosed with UC, people report distress about disruption to lifestyle (regular bowel movements, often with a sense of urgency, anxiety about feeling the need to be close to a toilet etc.), having to take prescription medication indefinitely (some medication can illicit nausea, mood swings and irritability), and sometimes having to live with a level of chronic pain. These are some of the main changes experienced in people diagnosed with inflammatory bowel disease.
Societal attitudes preclude people from openly discussing bowel problems. This usually compounds people's sense of isolation and willingness to disclose their condition to friends, family and work colleagues. Current statistics suggest one in ten Australians have a bowel condition requiring medication and regular monitoring by their doctor.

Bookmark: Mal's UC

(c) Blood Clotting & Blood Thinners

I am taking a daily blood thinning agent (Rivaroxaban), to help lower the risk of developing any further blood clots in either my legs or lungs (I've suffered two terrifyingly-painful "PE's" in six years)... a blood clot could move along a vein far enough to cause a stroke! I'll be on this medication for the rest of my life.

And no, they do not know what causes it!

One of the side-affects of this medication is that - it could make me bleeeeed!

Bookmark this page: Blood Clots

(d) Bi-Polar Depression

I also have been diagnosed and suffer from ongoing bi-polar depression ("bi-polar ii") (BP) and anxiety issues as well. (It used to be known as "manic depression"). I've been hospitalized a few time as a result... no fun.

What is it like for me?
... this is what it certainly can be like for me. It's awful.

What is "Bipolar Depression"? (click here).

50 Sufferers Describe Depression For People Who’ve Never Been Depressed (click).

Bi-Polar II - some of its effects

The 9 Depression Symptoms Nobody Ever Talks About

9 Things Only People With Depression Can Truly Understand

We're working together to get on top of things and nip things in the bud, before they blow out into something bigger. It's all generally going well at the moment, tho, thankfully. One day at a time. "Some days are better than others", as U2 said.

Yes, I am medicated for it (the antidepressant Effexor 150mg daily). These help a simple 'chemical imbalance' inside me, that help me find a sense of 'balance' between the highs and the lows, the 'Swings'. For me, it really helps.

And yes, it can be very debilitating for me at times, unfortunately. The two conditions (UC & BP) tend to go hand-in-hand sometimes, tho it's not always so simple to recognize a 'trigger' for me.

Plus, going 'public' with this condition has caused me some angst along the way... BUT the huge positive benefits of sharing of myself with others, outweighs any negatives that ignorance, denial or bigotry might throw in my direction.

It's often very difficult to explain how "The Black Dog" (cf below) effects you, or how you are feeling/thinking (it's like living inside a black canvas bag!), especially while you're going through it. Here's one way of looking at what it is like (click here).

I am very thankful and blessed having a good support network of real, true friends (both face-to-face and online) - they continue to be vital for me, especially at times when I've needed help and someone to just 'talk' to - unconditionally.

Here's one way to try to explain what it can be like for me, the "ups and downs"...

With bi-polar depression, it's about finding and maintaining the balance with the swings in mood

The medication helps me stay in that blue-shaded area below (to help stop those up and down "swings"), hence bringing a relative sense of 'balance'.

This is one way of picturing what it feels like when it starts to creep up and envelope you...
"Depression is humiliating. It turns intelligent, kind people into zombies who can’t wash a dish or change their socks. It affects the ability to think clearly, to feel anything, to ascribe value to your children, your lifelong passions, your relative good fortune. It scoops out your normal healthy ability to cope with bad days and bad news, and replaces it with an unrecognizable sludge that finds no pleasure, no delight, no point in anything outside of bed. You alienate your friends because you can’t comport yourself socially, you risk your job because you can’t concentrate, you live in moderate squalor because you have no energy to stand up, let alone take out the garbage. You become pathetic and you know it. And you have no capacity to stop the downward plunge. You have no perspective, no emotional reserves, no faith that it will get better. So you feel guilty and ashamed of your inability to deal with life like a regular human, which exacerbates the depression and the isolation. If you’ve never been depressed, thank your lucky stars and back off the folks who take a pill so they can make eye contact with the grocery store cashier. No one on earth would choose the nightmare of depression over an averagely turbulent normal life. 
It’s not an incapacity to cope with day to day living in the modern world. It’s an incapacity to function. At all. If you and your loved ones have been spared, every blessing to you. If depression has taken root in you or your loved ones, every blessing to you, too. No one chooses it. No one deserves it. It runs in families, it ruins families. You cannot imagine what it takes to feign normalcy, to show up to work, to make a dentist appointment, to pay bills, to walk your dog, to return library books on time, to keep enough toilet paper on hand, when you are exerting most of your capacity on trying not to kill yourself. Depression is real. Just because you’ve never had it doesn’t make it imaginary. Compassion is also real. And a depressed person may cling desperately to it until they are out of the woods and they may remember your compassion for the rest of their lives as a force greater than their depression. Have a heart. Judge not lest ye be judged." Karlee Ironside.
And yes... it's always there for me... just in varying degrees

Bookmark: Bi-Polar Depression

Some Mental Health Resources for you to explore.

Mood CheckMood Check - how are you feeling, on a scale out of 10?

(e) Anxiety & Panic Attacks

I suffer from a diagnosed case of occasional (albeit rare) anxiety/panic attacks (which are part of my bi-polar depression), tho they rarely happen in public. Most people would be unaware when I was having one, as I've developed a 'coping mechanism' to mask it from others (in public)... doesn't always work, tho...

The intense physical/mental stress/anxiety I suffered resulting from my separation and divorce (in the early 2000's [plus I suffered two nervous breakdowns at the time as well... no fun!] ), left me with some permanent physical scarring, due to a severe case of Eczema. I now have a few bald spots on my scalp (one reason why I still wear my hair long [albeit in a neat ponytail], and usually wear a hat/cap - to cover them), and a scar on the left-side of my neck/face (which I hide with my beard).
The whole experience has left me with some mental/emotional scarring as well, let's be honest.

Hey - let's be honest! Who doesn't get to their 50's without some 'emotional baggage', huh?

"Situational anxiety" is caused by new situations or changing events. It can also be caused by various events that make that particular individual uncomfortable. Its occurrence is very common. Often, an individual will experience panic attacks or extreme anxiety in specific situations. A situation that causes one individual to experience anxiety may not affect another individual, at all. For example, some people become uneasy in crowds or tight spaces, so standing in a tightly packed line, say at the bank or a store register, may cause them to experience extreme anxiety, possibly a panic attack. Others, however, may experience anxiety when major changes in life occur.

Panic Attacks: Six Coping Techniques

Things You Need to Know About People with Concealed Anxiety

With "Panic disorder" / "Panic attack", a person suffers from brief attacks of intense terror and apprehension, often marked by trembling, shaking, confusion, dizziness, nausea, and/or difficulty breathing. These panic attacks, defined by the APA as fear or discomfort that abruptly arises and peaks in less than ten minutes, can last for several hours. Attacks can be triggered by stress, fear, or even exercise; the specific cause is not always apparent.

"Grounding" really works for me, I find!

Some Mental Health Resources for you to explore.

Mood CheckMood Check - how are you feeling, on a scale out of 10?

Bookmark: Anxiety and Panic Attacks

(f) Anaemia

Anaemia can be defined as "a lowered ability of the blood to carry oxygen, due to a decrease in the amount of red blood cells or hemoglobin in the blood". It's a diagnosed side-effect of my "UC".

For me, it affects me when I have moments of passing dizziness, plus at times I feel very lethargic or weary.

It's being controlled via diet, plus Vitamin C supplements. I also have a Ferinject Iron infusion about every c.3-4 months.

Bookmark: Mal's Anaemia

English writer Samuel Johnson used the term "the black dog" in the 1780s to describe his own depression, and it was subsequently popularized by depression sufferer former British Prime Minister Sir Winston Churchill.

Bookmark this page : Mal's Medical Situations

Sources - 22 Nov 2012
Cartwright, P. "Coping With Ulcerative Colitis", London, 2004, Sheldon Press.