Category: Physical Disabilities

Coping With Life When You Are Disabled.

Copying With life When You Are Disabled.

I have this methology “if life gives you lemons, make lemonade”. I am not the type of person to whinge and moan, I just make the most of what I have and try to get on with it.

I always keep myself busy and set goals. However my physical and mental disabilities are obstacles that daily I have to get round.

My OCD is by far one of my prominent disabilities and have designed a quarantined cocoon area where only I have access to. This area allows me to be free of any anxieties that I would have in the normal environment. I have adopted this practice to save cleaning my whole home from top to bottom day in and day out. Believe me I used to clean from top to bottom every single day until I realised I was wasting valuable time doing something else.

Keeping myself busy does help to block out intrusive thoughts to a certain degree. I am the worlds worse for critising myself. I try to brain train to reason with myself that what I do is ridiculous and out of character to normal people, but it all is related to stress, anxiety and depression. Depending how stress I am under will depend how well my day will be. If I am super stressed, I find that I cannot concentrate and even do minuscule tasks.

My OCD is germ contamination related and I am even more conscious of my surrounding and the things that I touch. I dislike people visting me and visa versa. I prefer not to go out, hence I am not going out any time soon pandemic regulations or not.

I actually wrote an article on my other blog about germ awareness and cross contamination: https://marketingagency.cymrumarketing.com/2021/02/16/saliva-and-mail-cross-contamination-of-germs/

As for my other disabilities:

  • Cerebellar Atrophy (I lose my balance or grip and muddle my words up especially when I write, I also have mental blocks).
  • OCD (I am aware of germ cross contimination and and am careful what I touch).
  • Social Disconnection (I prefer my own company and not go out and socialise, although we can’t anyway but you get my drift).
  • PTSD (I have flashbacks of the physical and mental trauma I endured in the past and certain things trigger my depression).
  • Clinical Depression (This is related to past physical and mental trauma I endured, in which there are days where I go to a dark place).
  • Rheumatoid Arthritis (I cannot bend my knee, again from past physical trauma/abuse).
  • Dysphagia (I sometimes choke of food, I get a painful feeling followed by trouble swallowing and breathing and only when the food is dislodged does the feeling subside, gross I know but what can I do? I have been told I could have surgery but there is no gauarantee that it would work. I am not going to go under the knife for anything, I can tell you that for sure).
  • Epidural Analgesia (Chronic Back Pain, even bending down to feed the cat makes my back spasm, the same goes if I am standing for excessive length of time I have shooting pains from the small of my back to the nape of my neck. Simple taskes like taking out the rubbish or bringing in the grocery shopping has brought tears to my eyes in the past).

So yes I have good days and bad days but I do not dwell on my ailments and try to live the best way I can. I adapt to around my disabilities. Fortuantely for me I offer digital services so I can do 100% of my work online and do not have to venture out.

Stress and worry are contributing factors to my OCD, PTSD, Depression and Social Disconnection.

  • Getting headaches (I have regular headaches)
  • Having stomach cramps (I have a bad stomach most days, but that can be from drinking energy drinks to keep me awake).
  • Not being able to sleep (I find my medication helps me sleep but it takes a few hours for me to wind down, hence I watch a film or play a game, I also read books from time to time).
  • Feeling pains in your chest (I do not get them often but when I do it is scary as I have also experienced jaw ache and shooting pain down my left arm in the past). I have had an ecg scan done and the doctor said there was nothing wrong, yet the same doctor also prescribed antacid ‘Gaviscon’ to my daughter even though she was later diagnosed with MS after I admitted her into A&E.
  • Having constant worring (If I do not keep myself busy I do worry hence I try to keep my mind occupied all the time). Worrying only makes your health deteriorate and although life struggles can get in the way of your happiness, one needs to find a way to tackle the problem we are faced with, rather than sweep them under the carpet. Confronting your inner demons makes you stronger. Sometimes simply writing down your problems is the first step to dealing with whatever is on your mind. Talking to a friend or family member also helps but for me expessing my emotions in the form of a blog is theraputic in itself.
  • Having panic attacks (I only get these if I have to meet negative people). People that judge or critise, you know the people I am talking about or if I have a deadline in work or something that I have seen or heard that has triggered the onset of sheer panic. However for most part I am organised and know to how to avoid trigger warnings, so panic attacks are subdued.
  • Feeling shortness of breath, (I only get this if I cannot swallow due to my Dysphagia or at times when I have in the past been in distress, due to the trauma and abuse I endured).
  • Having mood swings with friends or family (I avoid socialising so no one knows my moods and no one can be on the tail end if I do have a bad day).
  • Finding it hard to feel happy (Continuously reassuring myself and staying positive that what I am doing will eventually change my life for the better, is enough to motivate me to get up and tackle every day tasks).

Although I was going to do a daily/weekly journal of my health, I am not able to do so at present as I have many projects I am working on and simply do not have the time, but I always try to strive to stay focused and optimistic that tomorrow will be a better day.

Obviously adopting a healthy lifestyle can help with coping with life struggles, such as:

  • Regular Exercise
  • Breathing Exercise
  • Meditation
  • Eating Healthily
  • Brain Training
  • Learning New Things
  • Staying Focused
  • Being Organised
  • Setting Goals
  • Time Management
  • Avoiding Negative People
  • Learning to Trust People
  • Motivation
  • Talking to Family and Friends About Your Troubles
  • Discussing your Problems with Professionals, Health, Finance, Relationships etc

Final Thoughts!

I am a disabled entrepreneur and I have created a business round my disabilities. The way I saw it when I first started out, I would not fit in or be accepted in a normal working enviroment and I am the most happiest I have ever been for a long time doing what I do and it works for me. So the way I see it is my disabilities are a blessing in disguise, as I would not be where I am today without them.

I avoid negative judgemental people especially if they have power trips (Trolls especially that have nothing better to do than try an bring a person down, these get immediately blocked).

As for me I will help anyone that genuinely needs my help. I am very good at analysing people and situations and I am very astute.

Stay safe, stay focused and stay motivated, nothing stays the same forever unless you let it…

What is Multiple Sclerosis (MS).

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.

At the time my daugher was put on Lemtrada (alemtuzumab).

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.

RED TAPE!

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.

https://www.ema.europa.eu/en/medicines/human/referrals/lemtrada

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 that On July 3, 2020 Sanofi Genzyme was notified that Lemtrada Home Phlebotomy Partner, Examination Management Services Inc., (EMSI) has gone out of business.

https://www.lemtrada.com/

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:

https://marketingagency.cymrumarketing.com/2019/10/15/lemtrada-alemtuzumab-sanofi-genzyme/

Doctors receiving money from pharmaceutical companies.

https://www.telegraph.co.uk/news/2016/06/30/individual-nhs-doctors-receiving-100000-per-year-from-drugs-firm/

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.

https://www.nhs.uk/conditions/multiple-sclerosis/symptoms/

The most common symptoms include:

Cerebellar atrophy

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.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3281565/

For Further Information Contact the Following Links.

https://www.nhs.uk/conditions/multiple-sclerosis/

https://www.nationalmssociety.org/What-is-MS

https://www.mssociety.org.uk/

https://www.webmd.com/multiple-sclerosis/default.htm

https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5487391/

https://jnnp.bmj.com/content/88/12/1065

https://journals.physiology.org/doi/full/10.1152/jn.00245.2018

Weak Bladder Problems We Don’t Talk About.

Things We Don’t talk About Because Its Too Embarrassing.

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:

  1. Drinking too much alcohol or caffeine (tea/coffee) or energy drinks. (I am guilty of this).
  2. 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.
  3. If you are not going regularly for a No2 and you find your are constipated.
  4. Infections and underling conditions affecting the lower urinary tract (urethra and bladder) – such as urinary tract infections (UTIs) or tumours in the bladder.
  5. Neurological conditions such as Multiple Sclerosis or Parkinsons Disease.
  6. Natural Childbith where your pelvic floor may be weak.
  7. 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)
  8. 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).
  9. Damage to the bladder or nearby area during surgery – such as the removal of the womb (hysterectomy), or removal of the prostate gland.
  10. Connective tissue disorders such as Ehlers-Danlos syndrome.
  11. Having a poor diet eating, spicy or acidic foods.
  12. Smoking.

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.

More Information about Urinary Incontinence please visit: https://www.nhs.uk/conditions/urinary-incontinence/causes/

I have recommended some incontinence supplements and aids below:

Final Thoughts.

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.

Disabled Entrepreneur

Being a self-employed disabled entrepreneur comes with many challenges. One first needs to walk before you can run so starting up as a sole trader and expanding is the most sensible strategy to take. When expanding a business it can be a huge psychological boost to be able to share some of the pressures and the risks with someone else.

Mastering the art of coping under pressure is very important and is a required attribute for any entrepreneur, but for someone who is disabled and has impairment issues that are continuous, or indeed sporadic and unpredictable can affect their health long term. Not being able to manage those pressures and can affect your business and can cause challenges in relation to workflow, planning, and client relationships.

Being disabled can affect your emotions and psychological feelings of confidence and motivation.

Finding strategies to overcome obstacles specific to each individual disabled entrepreneur is vital to sustaining your business. Some disabilities are invisible to most people but require heavy medication and constant management, this can make a person lethargic and react slowly.

When starting out as a sole trader and finding you have too much work to cope with single handily you have to put your health first and offset the workload either by outsourcing or employing people that can help you. Trying to do everything yourself will eventually affect your health even more. Rather than turn away business, decided to expand instead.

Whilst being in demand is flattering, clients who want you one on one as an individual working on their project can pose problems for a disabled entrepreneur. You have to have a critical time path (CTP) and plan your hours carefully. Be transparent from the start and make your clients aware of your disabilities. CEOs are human after all and they all started out from somewhere once so they should be able to compromise meetings face to face. With working from home being the norm because of ‘Coronvirus Lockdowns’ having virtual meetings via ‘Zoom’ is becoming very popular nowadays.

Depending on your circumstances and what type of job you do will depend if you need a public office/shop or not. Most businesses are now transitioning online saving them money in renting office space and business rates.

Some disabilities are unpredictable, one day you may be feeling fine and the next day you are not. Knowing how to work under pressure and to deadlines can be challenging but if for whatever reason you were not feeling up to it one day you can always re-schedule. CEOs are not Ogre’s, they do understand. Furthermore, if you have someone that can help you out and step in can also be beneficial to running a successful business. There are positives as well as negatives to being a self-employed disabled entrepreneur.

Having a disability is hugely varied, and so are entrepreneurs’ ambitions. Some might simply want to work for themselves as a one-man-band offering a service that makes use of their particular skill and managing their work hours to accommodate their impairment.

Even with modest goals, the challenges facing a person with a learning disability who wants to set up in business can feel insurmountable without support, there are “too many” barriers that are “distressing and challenging to get the right support needed.”

Getting financial help can be difficult especially if you are a startup and want to get a loan to buy equipment. Most loan companies including banks need to see a business plan and will also need you to show your previous earnings. Some disabled people may have very low or no previous earned income and simply want to be off the unemployed scale. In these cases, there are Tax Credits you can claim as well as Housing Benefit and Council Tax Reduction (Visit your Local Council Website For Help). By setting up a budget for your expenditure you can relatively easily get overdrafts and pay for things using credit cards. Do avoid loan sharks. Also, look at grants on the Government website to see if your eligible for a financial scheme.

It is fundamental you have access to a computer and the internet to get the relevant help you need in running a business. In order to succeed, having the right information and support, at the right time, is critical for any disabled entrepreneur.

Transportation – Having transport if you have to deliver goods or meet clients is essential. There are private hire cars and logistic companies available including concierge services. There are plenty of options available that can meet your budget.

By learning how to be confident and brushing up with your communication skills will give your clients and customers a reason to trust you and the product or service you are selling.

If you’re a disabled person running a business, you probably need that extra bit of empowerment and motivation. There is nothing stopping you from following your dreams and your dreams will stay dreams unless you find the strength to make your dreams into reality.

SUPPORT LINKS.

***Business Funding:

https://businesswales.gov.wales/coronavirus-advice/support/financial-support-and-grants

***Workplace guidance. Return to work safely. Guidance for employers in Wales.

https://businesswales.gov.wales/coronavirus-advice/workplace-guidance?utm_source=LinkedIn&utm_medium=CPC&utm_campaign=KeepWalesSafeAtWorkGS-LinkedIn-Ad1-English-Square

***Check if you can claim for your employees’ wages through the Coronavirus Job Retention Scheme.

https://www.gov.uk/guidance/claim-for-wage-costs-through-the-coronavirus-job-retention-scheme

***Calculate how much you can claim using the Coronavirus Job Retention Scheme.

https://www.gov.uk/guidance/calculate-how-much-you-can-claim-using-the-coronavirus-job-retention-scheme

Tax Credits.

https://www.gov.uk/browse/benefits/tax-credits

Personal Independance Payments.

https://www.gov.uk/pip