Tag: pain

66 Current symptoms

I have been advised to record an audit of my current symptoms, so here it is! I’m going to use the symptom list from the NHS website as headings:

Fatigue

I experience fatigue often. I still manage to work 4 days per week but find this exhausting.  I am no longer able to do everything I want to do and I need to ration my energy and allocate recovery time. I avoid doing anything after work and have had to cancel several social commitments.

Vision Problems

Thankfully I don’t have any MS related vision problems. 

Numbness and Tingling

This is an everyday problem for me, in fact I haven’t had a day without numbness and tingling for over 2 years. I get this in both feet and legs and sometimes in my left hand and it is noticeably worse when I’m cold. My left foot in particular feels like a cold, dead, heavy weight on the end of my leg!

Muscle Spasms, Stiffness and Weakness

This is also an everyday problem for me.  My legs are stiff and painful, especially when I get up in the morning or after sitting for a while.  Basically, when I stand up, I’m never quite sure what my legs are going to do!  I sometimes have spasms and twitching in my left leg.  I know I am much weaker than I used to be (but this is partly due to me being less active).  I have noticeable weakness in one side of my left hand .

Mobility Problems

There are lots of things that contribute to my mobility problems – issues with balance, spasticity (stiffness), weakness, numbness and lacking confidence all contribute.  I feel much safer when using a walking stick, especially on uneven or sloping surfaces.  My EDSS (expanded Disability Status Scale) score was assessed as 4 by my neurologist in June 17 and as 6 in November 2018. It was just 1.5 twelve months prior to this.  I’m not sure that I agree it is 6 now as although I require assistance for walking, I can still walk on flat uneven surfaces unaided.

EDSS

Pain

I have some nerve pain on the left side of my body.  During my last relapse, this was particularly painful (I’m told it feels like shingles pain) – thankfully it has faded to manageable levels, though has never disappeared.  The spasticity in my legs is painful at times. 

Problems with Thinking, Learning and Planning

In the MS world this is known as Cognitive Fog or Brain Fog.  I know I have this, although it is very hard to assess or measure.  

Depression and Anxiety

It is very difficult to NOT be depressed and anxious when you have MS!

Bladder Problems

Thankfully I don’t have bladder problems.  During my last relapse I had a common problem experienced by people with MS where I knew I needed to go but couldn’t! This is caused by damage to the spinal cord in the area that leads to the bladder, so the message from the brain doesn’t get through.  Luckily this wasn’t permanent, but it remains one of the things I most worry about as my MS progresses. 

Bowel Problems

Thankfully I don’t have bowel problems.

Speech and Swallowing Problems 

I don’t have swallowing problems and my speech problems are limited to sometimes being unable to recall a word for something (linked to brain fog rather than a speech problem).  About 4 years ago I had a period of slight slurring and was aware this was linked to the way the left side of my face and mouth moved.

Balance

For some reason balance isn’t on the NHS list, yet it is a very common problem for people with MS. My balance has got steadily worse over the last 18 months.  

Additional symptoms added 18.01.19.

34 Having a bad day

When I started this blog, I made a decision that I was always going to be open and honest about my battle with MS.  I find I have good days and bad days and sometimes feel deep despair, but mostly I feel positive and optimistic and look at ways to overcome challenges rather than letting them stop me doing what I want to do.

Today I am having a really bad day, both physically and emotionally.

Last night my lovely friend, Beth and I went to see the wonderful Billy Bragg at the Ritz in Manchester.  Billy was fantastic and inspiring, as always, but I discovered that managing my wobbly legs, in a crowded space, with a walking stick, in the dark is really tricky!  Luckily we managed to get a spot right next to the lighting/sound guy box and I was able to prop myself up for at least some of the evening. 

I had lots of realisations last night – I love live music and was previously a frequent gig goer, but I have been doing a lot less of it recently.  I much prefer to be in the standing area, as the atmosphere is better, but I can no longer tolerate standing up for so long.  By the end of the evening I had shooting pains in my legs, hips and lower back.  I found myself wishing for the last song to come and was upset with myself for feeling that …usually I don’t want the evening to end. 

Beth was dealing with her own challenges (fibromyalgia) so between us we felt ancient! 

Other minor problems I encountered were other people tripping over my walking stick (one person literally kicked it away, almost causing me to fall) and the Ritz being an old building, so the toilets were down some rickety stairs – not good when your legs aren’t doing as they’re told!  At one point, I went to the bar then realised I wouldn’t be able to carry two drinks and use my stick to get back to Beth.  Thankfully she had realised this too and had followed me to the bar.  Thanks Beth xx

The journey home was also challenging – going from the heat indoors to the cold outdoors compounded my pain and the bumpy bus ride didn’t help either! 

I sound like such a whinger, don’t I?!  Hopefully normal service will be resumed soon.

Today I hurt all over and I feel exhausted.  I could have been going for a walk in Macclesfield Forest with Niamh, Sophie and my favourite dog, Odin, but I’m just not up to it.  

I hate that this disease is robbing me of life’s simple pleasures – going to gigs, buying a round, going for a walk.  I hate having to think about what I’m doing on one day as it can impact on what I’m able to do the next (starting the day with a spoon deficit isn’t good!).  I don’t feel ready or willing to succumb to this way of life.

Anyway, I’m going to have a hot Epsom salts bath, then spend the day on the sofa, watching TV and cuddling with my cats …hopefully tomorrow will be a better day.