Archive | April, 2013

Medication Eve

24 Apr

Well, here I am the night before reinforcements arrive.  Mug of tea, two slices of walnut cake and then at 10pm, Greys Anatomy.  I love that show and I mean love it!!

I really want to start these drugs, I mean they help to extend your life, basically help to reduce damage, slow it down a little.  It was a no brainer for me, I know others choose not to and it is a very personal choice.  My fear is the side effects and even that is irrational to a point.  Every drug we put in our bodies comes with the potential of unwanted side effects, so why is it so intense with my chosen DMD?  I think one point is that I have been doing a lot of research and whilst that is good it can sometimes lead to too much thinking almost  to the point of talking yourself out of something.  Secondly, the side effects to be fair are pretty tough going, alterations to your blood levels, i.e. infection fighting, altered liver counts, seizures, heart problems, thyroid issues (already have), etc.  Then there is the flu type symptoms.  I have had flu once in my life and I thought it was horrid; I wouldn’t be bothered really apart from my Saturday job.  It is physical work and I just don’t want to go in this weekend feeling like I have the flu.  Problem is no one can guarantee whether it will happen to me, everyone is different.

It is clear that I am not a go with the flow type of person, no matter how much I thought I was or wanted to be.  I like to know what will happen and when; and there is the problem!!  Nothing about this disease fits in with that, oh dear, this is going to be a tough rough year and this I have accepted.

I have been trying to carry on as normal, it is almost as if nothing has happened.  For the last 2 weeks my husband and son between them have run me ragged, not on purpose but through sickness.  I have literally been up to my eyes in sick and diarrhoea, not nice at all.  My hands are red raw through handwashing that would make most peoples eyebrows raise as getting an infection like that would set me back weeks. The last time I had sickness it took me 2 full weeks to start to recover and my freckles almost disappeared and believe me that takes some doing.  It was after that episode I really really pushed for medical help, several years later here I am.

So, Avonex, my new best friend that I am ever so slightly afraid of, my body looks forward to working with you, we have some slowing down to do……


Crazy Golf

8 Apr

Had a nice day today with my son and husband.  We played crazy golf at a centre that we didn’t know existed, about 25 minutes away.  My husband only beat me by one point and I was pleased!!

My left foot started playing up about 10 minutes into the game, increased numbness which felt lumpy.  It was freezing as well and I just couldn’t get warm!  My son had a good time and that was all that mattered to us; we don’t get to do much due to money and we both feel guilt at times but he is loved and nurtured, we do what we can.

I had a real ‘moment’ in the restaurant afterwards.  You had to order at the desk first and the girl was ready and I felt hurried so after I helped my little boy select, it was my turn and I just couldn’t think straight.  I felt so overwhelmed and under pressure that I just ordered a coffee with my husband insisting I eat his chips.  I was upset that I couldn’t do a simple thing like order lunch promptly.  I felt a bit moody about it but luckily my husband understood my explanation of what happened.  I am doing that a lot lately, explaining why I couldn’t do x, y or z like I used to.  Only yesterday, I couldn’t cope with sitting in on my son’s eye exam at Specsavers.  We all went together but my husband dealt with the exam bit.  He chose cool Lego glasses afterwards 🙂

Is this a relapse?  This is something I’m not sure about really.  I have been having burning sensations reappear in my legs when I get up in the mornings, my emotions are questionable, i.e. as above and my fatigue has been worse on and off.  I need to email my Nurse and just ask her opinion if I am in doubt about symptoms etc.  until I get to be my own expert on what happens with my symptoms.

I’m still waiting for my LP appointment.  Cheekily I am hoping that they won’t bother now.  I can hope can’t I? lol!!

A quandary I have at the moment is, how do you deal with people (family) that know you have MS but haven’t acknowledged it and then ask you how you are?  I find it hard to know what to say, as I don’t want to offend or assume anything.  Then I think, blimey, I am worrying about everyone else, treading on egg shells, when I am the one coming to terms with this.  I know they are too, but I do wish they would say something, anything.  Something like, sorry to hear, how are you/coping etc? 

This is all very hard and I must remember I only found out in February and cut myself some slack.  I just want to do the right thing by others and myself and getting the balance right is proving harder than I thought.

Derailed and getting back on track

4 Apr

I haven’t posted for a while and I felt guilty about that.  I have been avoiding it mainly because I have been a ranting, miserable cow.  I seem to be completely incapable of talking about things without getting too passionate/on my high horse and its getting on my nerves, let alone anyone else!  This is all fuelled by fear of course.

Apathy has set in.  I haven’t applied for DLA as I keep saying what’s the point, I won’t get anything anyway.  ESA is out as if I have to deal with those Advisors, I fear loss of life, they are complete tossers, devoid of all empathy.  I claimed 6 months contributory JSA when I got made redundant.  I was scarred for life.  I am lucky my husband works but due to circumstances we are not as comfy as we should be but we deal with things.  It would be very helpful to have some assistance but I am petrified of the whole system plus dealing with how I feel everyday.

I am struggling with my Vet work.  On Saturday I was in pain assisting the Nurse and Vet with a poor dog that had ripped her paw.  We were on the floor and I had to hold her down and it hurt.  The next day, a 90 year old would have got about easier, no joke.  This upsets me, I just don’t know how to get my head around this job ending in the future.  I can only hope my DMD helps when I get on it.

Finishing my Counselling training is not out of the question, I need to finish that really.  I looked into the disabled student loan thingy and it looks good, just have to hope it pans out and I can cope with the huge commitment the course is.  There are too many what ifs at the moment.

I have lost confidence and the ability to concentrate, plan and think clearly.  I don’t see anyone other than my hubby, son and Vet colleagues for a short time.

Here comes the fear again.