Have MS? Then you need to self regulate your care.

Yes it’s true! You are the masters of your own destiny. You are the epitome of the expert patient the NHS talks of. You monitor your condition and when required you inform all the appropriate services of the help you need when you need it (that is assuming you have services in your area) e.g. an appointment with your Neurologist, MS Nurse etc. Yes the responsibility is all in your lap. It’s all down to you!

This week I have been reminded of my own failings in my responsibility to have all the answers and knowledge on the specific help I need. I do hope you are noting my sarcasm by the way.

On a visit to an Orthopedic Surgeon during the week on a non MS related matter (problem ankle) when asked what Physio I was currently having (I explained about my MS and my right side weakness) he seemed shocked when I confessed I had never had any Physio. ‘Well firstly we need to get you some Physio as you have very little strength in your tendons on this ankle’ was his reply.

My Neurologist, MS Nurse or GP had not recommended Physio and I had failed to inform them that I thought I should have this treatment.

Later in the same week I was informed by my MS Nurse that I have been using the wrong needle in the wrong area of my leg for my Avonex injections. She talked of orange needles instead of blue. Orange needles! This is the first mention of orange needles! I’m using the blue needle that comes inside the dam packet with the injection. I don’t have nursing qualifications and know nothing of needle sizes. Orange, blue, these are just colours of the rainbow to me.

I’m clearly not the expert yet. Only a B+ for me. Must try harder!

MS A Life Modifying Condition

MS is a degenerative neurological disease of the central nervous system (brain and Spinal cord) which can cause a very wide array of symptoms. Some of these include: numbness, weakness, loss of muscle coordination, pain and chronic fatigue as well as problems with vision, cognition, speech and bodily functions (bladder and bowel control). The progress, severity and specific symptoms in MS are unpredictable and each person given the diagnosis of this infuriating disease will travel down a different path with their own personal collection of symptoms to cope with on a daily basis.

So if you are reading this and you don’t have MS just take a few minutes to digest this information.

Ok so now you might be thinking ‘Shit that is scary stuff! How can anyone cope with all that fear and uncertainty?

Now think about dealing with that every day.

Multiple Sclerosis comes under the term ‘Long Term Conditions’ however I would also call it a life modifying condition as once you have MS, as the disease progresses you have to learn to modify and adapt to the challenges of the various symptoms.

The facts given to you as a person with MS are that it is degenerative, you will have periods in time when you will experience a wide variety of symptoms and you may or may not recover all the ability you had prior to a relapse ( I should point out I have RRMS). It’s a great pile of uncertainty and fear to mentally cope with.

A huge mind F**K!

Now everyone deals with health difficulties and illness in different ways and all I can tell you is how I put all this into some kind of perspective so that I can carry on with my life.

BUT……. what I can say is that my life is different. I am different. MS has changed me and I have had come to terms with that. I now modify my life to function with MS.

I can admit I have cried, been very low, been angry and scared and also fearful of the future and how I will cope with increasing symptoms and their effects. I have also grieved for the life I wanted to have before MS, but I am a resilient individual and I've found my inner strength.

Now three years with MS I have accepted who I am and the fact I will spend the rest of my time on this earth with MS so I’m not going to fight it... but I still need to manage it.

I have learned to pace myself and know that when I do push myself (e.g. a weekend away full of activities) I will pay for it the next day but I accept that and adjust my life accordingly.

Housework needs to be done in shorter bursts (gone are the days of starting at the bedrooms and working my way down through the house) and now I plan ahead. It’s something that still makes me occasionally angry even after three years but as I have mentioned before I am a bit of a stubborn old goat and getting on and doing things is a fundamental part of my personality.

Before MS arrived in my life, I was never going to climb Mount Everest or run a marathon so I’m not considering that now. I’m just living an ordinary life and find that MS has actually made me really appreciate my family, my lovely fella, and  friends and the support they all give me.

Happy New Year.............. My Arse!!

So my start to 2012 has been anything but happy actually. I started the year off in a low mood and in pain (muscle spasms in my back which is at its worst in the early morning) and as January moved into its second week things went further downhill. I woke up on the 11th in terrible pain everywhere. I felt like in the night I had been beaten to a pulp by a world champion boxer. As well as the battered and bruised feelings all over me I had sharp stabbing pains in my neck, shoulders and lower back. Just sitting up in bed was a test of endurance. Initially I didn’t have any numbness or MS sensations in my right leg or foot (which I've had with every relapse so far) so I didn’t immediately connect my pain with MS but, after a couple of days they appeared and I realised I was probably fighting an infection.

When you have MS other infections such as a common cold can spark off MS symptoms or make others like fatigue even worse for a while. In this case it was a nasty throat infection. On the Monday morning my throat had closed down and I could hardly swallow so some hefty antibiotics and a few more duvet days and things were starting to settle down again.

I had a massage booked at a Spa a week later (Birthday present from my kids) and I made myself well enough for that. I’m a bit of a stubborn old goat and I didn’t want to disappoint my son and daughter and have to cancel their lovely thoughtful gift for me. Oh and the sound of warm essential oils massaged into my back and neck sounded wonderful as long as I said those essential words ‘be gentle with me!’ to the therapist. My Spa day was heaven and having my son and daughter stay the weekend (they both live in London) was a real boost to my crappy negative mood but unfortunately it was short lived.

It’s now February and I still wake nearly every morning with pain. I have conversations with myself in my head every day

"You should go to the Doctor and try some other medication...."
"Yeah but maybe I should just wait a bit longer and see if it will settle on its own ...."
"I’m ok, and I can deal with it.... "
"Oh God I hope I'm not stuck with this pain.... "

I feel a bit lost in my head at the moment. Everything feels like such an uphill struggle and I know I’m not coping emotionally very well. I need to get my head straight. I need to find the positive Deb in me.

I need my mojo back.

MS Nurse: Friend or Foe?

I know that the support of an MS Nurse is brilliant for some people and I have had a small amount of experience of that while in the London area but my current Nurse is not on my Christmas card list.

My GP recently described my area of England as ‘a bit of a desert as far as MS support goes’ and that is certainly true of my local area. My relationship with my current MS Nurse has been difficult from the start and she continues to disappoint. When I compare the attitude, support offered and caring personality of my MS Nurse based at a large London Hospital and where I am now it is like chalk and cheese.

Nurse 1, I will call her, always followed up every contact and offered a home visit when I felt confused about things, offering support to both my partner and my daughter to help clarify questions about MS, if I felt it was needed. She always gave me straight talking information and practical suggestions and never made me feel like just another patient on her list. To me she really was a supportive friendly professional to confide in and the person to smooth the pathways between myself and my GP and also acted as an efficient liaison between the Neurologist and myself arranging earlier appointments when needed and passing over all the relevant information.

Nurse 2, doesn’t have any of these qualities unfortunately. She has consistently complained of her huge caseload of patients to me from our very first telephone contact. She inspires no confidence as to her management skills, as practically every appointment arranged has been rescheduled. The basics were not ordered correctly when I started on Avonex injections and every meeting with her has finished with a flurry, as any long conversations are definitely not encouraged! I actually did my 1st injection not with my MS Nurse but with the far more supportive Nurse at my GP surgery. Having given me the basic instructions on how to inject (in a sponge) a few weeks before, Nurse 2 didn’t even give me the courtesy of a follow up telephone call to check on how I was doing. I have contacted her again recently regarding ongoing pain (following a further relapse) and have again received no follow up contact.

I have experienced firsthand the differences in the role of MS Nurses and can clearly see that they can effectively support people in the community with MS. They can be extremely effective in both liaison and support for both patients and other professionals and act as a key link in managing this long term condition. However, clearly their caseloads needs to be monitored and as in Nurse 2, they need support, to give us, their patients the support we need.

Injections... Always a sore point!

My thigh is still a bit sore today.

I should of course explain that statement as it does have relevance. I am on Avonex (intramuscular disease modifying drug) and inject once a week and sometimes a few days after my leg just gets a bit sore at the injection site. It must be my rubbish technique! I did once in the early stages inject into my thigh bone (very painful, definitely wouldn’t recommend it) as my GP advised me when I demonstrated where I had put the needle in and told him how painful it was.

"Ahh I think you were a bit heavy handed and went into the bone" he said and then went on to give me some guidance on the best portion of my generous thigh to use.

I am lucky to have a lovely GP who gives you time to explain your problems or concerns and doesn’t just stick to the allotted 5 minutes appointment time. The nurse at the surgery is also brilliant.

A quick funny story about my support from the nurse.

It’s January 2011 and I’m with the nurse at the Doctors surgery ready to do my 1st injection. I’ve read all the information provided by Avonex, watched the DVD, practised with a piece of sponge with my MS Nurse and now here we are, my partner by my side and I’m ready. As I sit, jeans around my ankles. thigh awaiting it’s fate, needle in hand........ Ping......all the lights go out. Power cut!

Yes I did my 1st injection by torch light. It could only happen to me!

Apparently I did use a degree of force (Nurse actually jumped) and commented that although it was an intramuscular injection a swift dart action was all that was needed. We did all have a good laugh about it and I think it’s one appointment she just might remember.

Anyone else out there using Avonex have any stories or bits of advice when they started injecting?

I have a somewhat difficult relationship with my MS Nurse but that’s another story..............

Welcome to my Blog

Hello I’m Debbie and I feel the need to write this blog as I can’t seem to find anything out there on the web that actually represents me and my journey with Multiple Sclerosis.

I find most of the information is medical. Various lists of symptoms (all very scary reading when first diagnosed) and explanations of the disease and diagrams of demyelination. Books and leaflets available for every manifestation of the possible path of MS (incontinence, fatigue and spasms to name but a few) and the categories of MS. Ah, yes, the depressing explanation of Relapsing Remitting MS and the inference that this moves onto the next stage at some point into Primary Progressive. A story of disability, loss of independence and madness (sorry cognitive impairment). Well it’s not a story with a happy ending is it?

At this point I feel I should use one of my favorite quotes:

“Life may not be the party we hoped for but while we're here let's dance”

That sums it up really for me. I had my first relapse at the age of 48 and it took me four months to recover. I woke up in the early hours one morning (having spent the previous week feeling very tired and unwell) completely numb on my right side from the top of my thigh to my toes and so the journey into medical examinations and tests began. As the relapse took hold my balance and mobility were badly affected (only able to walk with assitance) and I suffered various other problems including the 'MS Hug'.  By the end of that year, I’d had a second relapse (optic neurosis this time) and the official diagnosis of MS.

Now on a positive note (I know what your thinking, about time!) that was two years ago and currently I am still driving (my sporty Mini), I walk independently and I’m a step mum for two young (primary school) children. We've had two holidays this year (I actually managed all the steps up to Edinburgh castle!) and I get on with life, this new life of mine with MS. It’s not all plain sailing and I currently have some ongoing pain that I’m trying to get under control but it’s getting there.I appreciate there must be lots of other people out there like me at the earlier stages of this uncertain journey and I hope my blog may be of some help to you as it’s not all doom and gloom. It is very much a mind set of how to cope with the uncertainty of a diagnosis of MS and where that may lead you.

Please leave me a comment if any of this strikes a chord with you.