Friday, 27 June 2014

RADAR KEY

World Continence Week will always be held from Monday to Sunday in the last week of June.  Therefore World Continence Week this year will be heldon Monday 23rd - 29th June, 2014.


World Continence Week (WCW) is an annual initiative managed and run by the International Continence Society (ICS).  Its primary aim is to raise awareness of incontinence, and incontinence related issues.

The other week I received another invitation to attend the 'Continence Clinic' at Leicester General Hospital (LGH).  I have blogged about this before (see Continence BLOG) about my last visit.  I commented previously that "I always refer to it as the 'incontinence clinic' - but my GP always corrects me, as the correct and more positive terminology (we have to at least try to be positive about these things) is the 'Continence Clinic'."  I wasn't thrilled the first time that I went, and this time I had a better idea of what to expect; a better idea about the prospect of being prodded and poked in places you don't necessarily want to be prodded and poked, but they had kindly invited me, and so I went along.



The Doctor and Janet the Nurse were lovely, they are lovely.  Really lovely. Because actually; it is all terribly embarrassing.  Because actually; nobody want to talk in detail about their bodily functions.  Because actually; nobody wants to discuss either their bowels or their bladder.  A friend, a comrade with MS commented that, "Incontinence is perhaps one of the most humiliating MS symptoms".  But the staff at the Continence Clinic understand this, are sympathetic and understanding and helpful.  They also retain a sense of humour, which really is invaluable.

Later on that evening I received a message from a friend asking me if I'd had a good day.  I replied explaining where I'd spent my afternoon, and this eventually led to a discussion about a 'Radar Key'.



I was asked if I had a 'Radar Key'.  I hadn't.  I admit I'd never even heard of one.

What is it?  What is a Radar Key?



It sounds quite exciting, it sounds like it could be a Doctor Who Gadget like a Sonic Screwdriver.  It really isn't that exciting.  But, I found out that it is a large, silver-coloured key.  This large, silver-coloured key opens disabled toilets.  Of which there are more than 9,000 accessible toilets in the UK, and these can be opened like magic with a Radar Key.  (I rather suspect that a Sonic Screwdriver may be effective too, in opening disabled toilets if I had one of those).



This is the Radar National Key Scheme. The National Key Scheme (NKS) offers disabled people independent access to locked public toilets around the country. Toilets fitted with National Key Scheme (NKS) locks can now be found in shopping centres, pubs, caf├ęs, department stores, bus and train stations and many other locations in most parts of the country, therefore offering independent access to these toilets by using a special key which can be bought from the Disability Rights UK.The first Radar toilet opened in 1981. Since then, more than 400 local authorities and thousands of businesses have joined the scheme. Some 9,000 toilets are now listed as being accessible via the Radar key but the figure is probably much higher.


Official Radar keys cost about £5, including postage and packing. These can be bought from participating local authorities or the Disability Rights UK shop.  Although some councils give them away for free.  And there are lots of imitations and copies available on the internet.

It is called the RADAR scheme because Disability Rights UK was previously called theRoyal Association for DisAbility Rights.  The thinking behind the radar national key scheme was that People who need to use a locked disabled loo can now go in peace, and quickly, without the indignity of asking someone if they can 'go', please and they shouldn't have to wait and should access a clean facility.



The truth is a lot of people with MS do have issues at some time with either their bowel or their bladder.  It is estimated that it affects around 50%-80% of people with MS.  For them it can either be a rush to get to a WC, or they can't go at all.  All of which is an inconvenience.  And requires a convenience.  Bladder and bowel problems occur commonly in MS, and can range from mild incontinence or constipation to more severe problems. Bladder problems include the need to pass water frequently and/or urgently, incomplete emptying or emptying at inappropriate times.  Bowel problems include constipation and, infrequently, loss of bowel control.



So faced with these difficulties it may be useful to have a Radar Key, if you haven't already readily got access to a Sonic Screwdriver.

Thursday, 19 June 2014

BLUE

Each year the MS Trust and MS Trust supporters take part in 'Be Bold in Blue' for MS Awareness Week (28 April - 04 May, 2014).

 

This year the MS Trust is celebrating 21 years of providing advice and guidanceand has developed a list of 21 challenges (http://www.mstrust.org.uk/msawareness/21challenge.jsp) aimed at raising awareness of MS.

"To celebrate 21 years of providing free, positive practical information, in the run up to this year’s MS Awareness Week we’re running the MS Trust 21 Challenge: 21 ways in 21 days you can get involved and make a difference for everyone affected by MS." 

The MS Trust have a fantastic website for those diagnosed with MS or for those wanting further information with News, Advice, Publications, Research as well as Information for getting involved:http://www.mstrust.org.uk/



One of the MS Trust 21 Challenges was 'to organise a 'Be Bold In Blue' Dinner Party!'



The girls (my 'Book Group Girls') and I met up (see ICE-CREAM BLOG) and we thought that this was an absolutely splendid idea, to have a blue-themed dinner party.  We immediately brain-stormed the idea: BLUE Outfits.  BLUE Food.  BLUE Wine.  BLUE Movies.  Steady on girls!  However, it proved slightly more difficult than we'd envisaged to find a suitable date; but we did it, we couldn't find a date during MS Awareness Week, we are a bit late, but we are doing it.  We are doing it now.  Better late than never. Exactly.



We decided we wouldn't do a full Dinner Party, as that would involve cooking and coordinating dishes; and although we are a group of immensely competent women, more than capable of arranging a fabulous dinner party, the effort involved in finding a date had somewhat zapped us, had drained us of our usual legendary enthusiasm and so we decided on a 'Be Bold In Blue' Cheese and Wine Party. BLUE Cheese and BLUE Wine.   Great. We agreed we could do that.  Once we'd agreed the blue wine we'd be drinking wouldn't be BLUE NUN the real organisation started, and with our usual level of motivation and passion and fervor and gusto.



The lovely Fund Raising Team at the MS Trust kindly sent us some MS Trust Balloons and Flags and stickers and a collection box to collect the money we raised.



And then we found a variety of Blue things.  Blue Plates. Blue Napkins. Blue Spectacles.  Blue Wine Glasses.  Blue Nail Varnish. Blue Outfits. 




We were having so much fun that we were joined by the younger family members, who also enthusiastically embraced the blue theme and then we ended up watching (and singing along to) the DVD of 'Frozen'.


know that I am lucky. I know that I am very lucky. I have amazing friends. I have absolutely amazing friends who recognise the difficulties that I experience because of my MS and they accept them.  They unequivocally accept them. They know that I struggle, that I am very self-conscious about various aspects of the condition and they make allowances and exceptions; so that I no longer feel awkward, embarrassed or ashamed in the things that I now struggle to do.



During the evening in raising awareness and raising funds for the MS Trust it felt that we were celebrating the 'battle' that those of us with MS are fighting, and we were highlighting the fact that it is an on-going fight that we won't give up until we have won.  It felt as though we were indeed MS Warriors.  We were enjoying ourselves. We were having a laugh.  We were laughing in the face of MS.  This was quite humbling, but hugely reassuring to know that I have such tremendous support from my friends.



I can happily report that we had a simply splendid night; it was great fun, it was awesome and I think we definitely proved that there is a lot of truth in the statement that 'laughter is the best medicine'. 



There were certainly lots of Laughs. Balloons.  Glasses. Spectacles.  An auction.  BLUE Cheese. Crisps and Crackers.  We charged our BLUE glasses with BLUE Cocktails, and we raised them; we also raised awareness, and we raised money.  In all we raised £30 and we had a great time.  I think that is evidence of a very successful evening.



You can donate to the MS Trust:


Or have a look at their website for other ideas of how you can raises funds and awareness, and how you can have great fun doing so:


We have already got ideas and are making plans for future events; and have lots of ideas for themes.  We're already identified as date, so there is already something to look forward to, and something I shall be blogging about at a future date.  Thank You Elise, Vicki, Donna and Lynsay for being so strong, thoughtful, generous, kind and funny; and for being just generally amazing friends.

Friday, 13 June 2014

PAIN

I am in pain. It hurts.  It just hurts.  It just hurts absolutely everywhere.

Pain really is terribly unpleasant.  And it is hard to describe, to put into words just how dreadful it feels.   Just how awful it makes you feel.  How debilitating, how devastating, and how unbearable it actually is.   The Internstional Assosiation for the Study of Pain's widely used definition states: "Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage."  It is difficult to calculate the impact that it has on everyday life.  It just takes over and is all-consuming.


The pain experienced with MS is often neuropathic pain and is caused by damage or disease affecting any part of the nervous system involved in bodily feelings (the somatosensory system). For people with MS therefore, this Chronic Pain can be another one of those 'invisible symptoms'.  And only the person experiencing it can truly know how unbearable it really is.  How terrible it makes them feel.  This can be emotional and can lead to distress, fear, anger, agony and frustration.  This is all rather miserable and can affect your emotional response, affect your mood and therefore your ability to cope and deal with everyday activities.  This is exhausting.  This can make you grumpy.  I know it makes me grumpy. The proverbial 'bear with a sore head', the bear with a sore everything.


Being in pain, to constantly hurt or ache is exhausting.  It is almost a torture of sorts.  It is unbearable.  To constantly and continually be in pain, pain that is relentless and persistent and incessant and painful.  When there is no relief. When there is no escape.  It gradually wears you down.  It gradually wins.


For people with MS the pain they experience isn't that acute pain of stubbing your toe, or stepping on Lego, it is a chronic slow, persistent, lasting, continuous, nagging, irritating pain which is likely to be the result of nerve damage (in either the brain and/or the spinal cord) that might cause a range of sensations, and that may take a variety of sensory forms, such as:

  • Squeezing or crushing
  • Cold
  • Hot or burning
  • Sharp or Dull Sensations
  • Like ants under my skin or ‘creepy crawlies’
  • Creeping
  • Aching
  • Pins and needles

This neuropathic pain may be caused directly by nerve damage, or indirectly, due to other MS symptoms.  This is referred to as 'Dysaesthesia' or 'Paraesthesia' (altered sensation).


There are a number of natural pain management techniques.

  1. Endorphins: these are the body's natural pain relievers, and they can be as strong as many pain relievers. They work by blocking pain signals from ever reaching your brain. Endorphins also help alleviate anxiety, stress, and depression, conditions that often accompany and exacerbate chronic pain.  Any activity that gets your blood pumping for a sustained period will release pain-relieving endorphins into your system.

  1. Friends: those who have regular contact with others, (and with others dealing with similar forms of chronic pain) find that their pain becomes more manageable (see my FRIENDS BLOG).  You can laugh with friends, you can cry with friends, you can drink wine or drink tea and eat cake and chocolate and ice-cream with friends.

  1. Get Outdoors: getting out and getting some fresh air really does do the power of good.  10-15 minutes of sun exposure a day can help the body produce vitamin D.  It has been found that people who got the recommended daily 400 to 800 IU of vitamin D experienced less pain than those who didn't.

  1. Meditation: meditation and relaxation and mindfulness comes in a huge variety of forms, find one that works for you.

  1. Sleep: it is important to get a healthy restorative amount of sleep, this includes the importance and power of naps.

There are also Alternative Therapies that are thought to help with the management of pain, such a Tai Chi, Yoga, Massage and Acupuncture.   And there are Complimentary Therapies such as Cognitive Behavioural Therapy and Distraction Therapy, which are also thought to be helpful.


Pain is unfortunately a factor of MS for a large number of people.  The MS Trust quote reports that suggest that 'up to 80% of people with MS may experience pain at some stage'  Different types of pain are managed in different ways. And as with everything with MS, no two are the same.  Pain is subjective.  Pain is unpleasant.  Pain is real.  There isn't an answer.  There isn't a solution, when you sit there with tears rolling down your cheek.  There just isn't.  You know your body better than anybody else, you just need to find what it is that works for you.

Friday, 6 June 2014

STEROID INFUSION

The other week I experienced my first intravenous (IV) Steroid Infusion.


It has never been absolutely clear whether my MS is Relapsing Remitting (RRMS) or more Progressive in nature (PPMS).  As my symptoms are fairly constant (Terrible Balance, Fatigue, Cognitive Dysfunction, Continence issues, and various Sensitivity problems) and these do not seem to fade away either partially or completely.


It was therefore questionable as to whether steroids would be a useful aid for me, to offer relief and to aid recovery.  But, having experienced what could possibly be a 'flare up' or an 'episode' or an 'exacerbations' or a 'relapse' recently, with a distinct worsening of symptoms, it was suggested that I have a three-day Steroid Infusion to see if this helped to ease or lesson my symptoms at all.  The general consensus of my MS Nurse, Neurologist and GP seemed to be that is was certainly worth a go.

So, I made an appointment to visit Ward1 at Leicester General Hospital on three consecutive days.


Firstly and most importantly, I have to say that the nurses and staff on Ward1 at Leicester General Hospital (LGH) could not have been nicer or lovelier or more splendid, and I really cannot stress that enough.  They really were absolutely tremendous.  I really cannot thank them enough. (Deanne, Keeley, Louise, Jane, Mariesa, Tracey, and Sue - sorry to the others whose names I didn't catch).


This was partly because the nurses treated me as someone with a genuine medical condition.  I am rather used to the 'You don't look sick' mentality of so many people, people who perhaps unintentionally, but nonetheless, seem to look at me and feel entitled question the fact that I am ill; question that I do have a disease, a condition, an illness.  That I am in constant pain. This lack of understanding is one of the worst aspects of living with an 'invisible illness' like MS.


And that is what it is, this is what it is, an 'Invisible Illness'.  But people are not comfortable with something that they can't see; it is more difficult for them to understand.  But the nurses didn't make me feel like this, didn't make me feel like a fraud, like I was faking my condition.  This genuine understanding was perhaps the most kindness and caring I have received since being diagnosed over three years ago, and it made me feel accepted.  They understood that I genuinely have a debilitating degenerative neurological condition.  This was hugely reassuring, and something I can hardly even begin to thank the nurses of Ward1 LGH enough for.


The role of steroids for MS relapses has been accepted for many years.  Most neurologists now prescribe steroids for acute relapses for people with relapsing-remitting MS (RRMS).  And the evidence seems clear that they shorten recovery time from individual relapses.

It is not entirely clear how steroids work in aiding the recovery process, and I'm not a scientist or a medical personnel or practitioner, so I'm not going to even attempt to try to explain it, it has all got to do with chemicals, and this really is not my area of expertise.  But, MRI studies have shown that steroids significantly decrease the amount of swelling around individual MS lesions, causing better nerve transmission through these affected areas.  These effects are seen on MRI within hours of taking the first dose.  In short then, steroids are found to be helpful.


Everyone reacts different to steroids and to steroid infusions.  Some people experience benefits almost immediately, some people take a little longer for the medication to kick-in, and some people don't really experience a huge change or experience much benefit at all.  But as we know with MS, 'No Two Are The Same' so it probably isn't altogether surprising that people respond differently.

And just as no two experiences of the condition are the same, and no two experiences of Steroids are the same, no two experiences of the side-effects of the drugs are the same either.  Not everyone experiences side effects from IV steroid treatment, but as with most drug treatments there is the possibility of side-effects, and some of the most common side-effects of steroids are:

  • Stomach irritation, such as indigestion and/or heartburn
  • Increased energy
  • Rapid heartbeat
  • Flushing of the face, neck, or chest
  • Feeling warm or cool
  • Retaining fluid (avoid table salt and salty foods)
  • Mood changes (euphoria, irritability, nervousness, restlessness) or mood swings
  • Metallic taste in the mouth
  • Insomnia
  • Nausea
To be honest I didn't really experience either benefit or side-effects, well, nothing obvious.  I did experience Insomnia after day two, and on day three my temperature had increased, which for me was actually a blessing as I am always cold, but the nurses noticed that is was easier to take a sample of blood for testing as my hands were warmer. 


I think for me, as much as the medication may or may not have helped my condition, I felt that I was given a huge boost, a really tremendous boost by the lovely and caring Nurses on Ward1.  I felt that my welfare and well-being really was their primary concern.  And who could ask for anything more?  I certainly couldn't.  Nothing was too much trouble.  I was made to feel cared for.  The standard of care from the Nurses really was fantastic, and that in itself was a real tonic.

And as I said before, I can hardly even begin to thank the nurses of Ward1 LGH enough.  Thank You.

Wednesday, 4 June 2014

BIRTHDAY

Well, this year marks my 41st Birthday. 

Yes, today I am 41 years of age.  Blimey. How did that happen?  Turning 40 last year was a bit (a lot?) of a shock, and then already that is a whole year ago, and I am 41.  And, to be honest, I'm still not a whole heap closer to ticking off any of those milestones that I was planning on having achieved by the time I was 40!


Turning 40; and especially the latter part since the beginning of 2014 it has all been a bit of a Roller Coaster.  I've not been terribly fortunate in that I have experienced health difficulties and I haven't been able to work, which has been a real struggle, as actually I rather enjoyed the routine of getting up and going to work, and meeting people and contributing, and being part of something.

I have therefore chosen to channel a lot of my thoughts and energies into this BLOG.  This has provided me with a creative outlet into which I can share my thoughts and ideas and hopes and dreams and frustrations.  The idea is that the BLOG is not a 'BLOG about MS'; the idea was that it was a BLOG about 'my life with MS'.  About me 'not being drunk' about how my MS impacts upon my life; impacts upon all areas of my life.  So, yes some of the BLOGs are directly related to specific aspects of the condition e.g.  FATIGUE; DISABILITY, while other BLOGs are related to other areas of my life, to other things I enjoy e.g. SHERLOCK HOLMES; CINEMA; KINDNESS; FRIENDS, and how my MS now directly or indirectly plays a role in those areas of my life, or not.

Things I have realised that I am immensely grateful for during this year, and yes, I did already know this, but the fact has really been brought home and been reiterated, are my family and my friends.  I don't want to name names as ultimately I am bound to forget someone (cognitive dysfunction/brain fog) and that really would be unforgiveable.  But I think those of you who have been there for me already know who you are, and now how immeasurably grateful I am to have you in my life.

I am also aware that there are people that I thought were my friends, but who are sadly unable to accept that I am not the person that I was, and that this cruel condition is not something that I have chosen or that I have control over, and they have chosen not to be friend and not to be part of my life.  I have had to sadly learn to accept this.  Realise that I probably over-estimated them.





I hope that these BLOGs are informative and useful and thought-provoking and humorous and enjoyable to read.  Thank You to those of you who do read them, those of you who leave me comments, who engage with me through these posts.  Those of you who are prepared to come along on the journey with me. Your company is valued and enjoyed and appreciated.

So, anyway, turning 41. I don't really have any plans for what the day will involve.  Possibly any of the following: Cake. Time with Friends. Presents. Laughing. Bacon Butties. Cards. Sunshine. Animals. Chocolate. Coffee. Flowers.  Ice-Cream. Happiness. Tea. Guinness. Magic Tricks. Gossiping. Pizza. Benedict CUMBERBATCH.


I certainly don't know what my 42nd year will comprise of.  I guess I shall find out.  I would love to think that it would involve catching up with those friends that I do not see very often, as well as more adventures with 'the usual suspects'.  But, as ever I shall share it with you, with those of you who are interested, in my future BLOG Posts.


So, HAPPY BIRTHDAY ME!  And 'Thank You' for sharing it with me x