So Frustrated

Oh I could crush a grape at the moment.  Part of H's MS at the moment is that on an evening his legs feel like they are burning and he has uncontrollable twitches.  In bed, he can wake me up he's twitching so much - though strangely he can sleep through them :-)

So the MS team at the hospital wrote to our GP to ask him to prescribe a certain drug.  Hubby went today to ask for the drug and the Dr refused to prescribe it, saying he'd never heard of it.  Now if I received a letter with a new drug on it I would google it to look into it.  So he has prescribed a drug which H's Dad has been taking with some major side effects so Hubby won't even get the prescription filled and the drug only stops the burning not the twitching.

All I can suspect is that either it's a cheaper drug or the Dr gets a bonus for prescribing it.

On another note the MS Physio arranged for a chair to be delivered this week for Hubby to test out to see if it makes it easier for him to get up and down.  Shame it's obviously come from a smoker's home and now my living room absolutely reeks. - it gets collected next week!!!

The NHS is sadly not fit for purpose with long term illnesses and it is so frustrating - ARGH.

Rant over!!!

Disappointed

My friend got married yesterday.  Shush it was a big secret.  Only 6 people knew about it, only 5 went to the wedding (including the bride and groom).  I've seen some photos and they look so happy.

I wanted to share in their happiness and ordered them a gorgeous photo frame online.  It was cream, had room for a number of photos and with "Mr and Mrs" on the bottom.  It took me ages to choose as I was nervous it would look tacky.  It didn't.  Sadly it was badly wrapped (from a major online supplier) and it arrived smashed into 3 pieces of glass.  Who posts  glass in the thinest layer of bubble wrap inside a small box and then put the box in a couple of sheets of paper inside a massive box???????????

I now sit here waiting for it to be picked up and I hope I get a refund quickly.  I am meant to get an email to tell me which hour of the day they are coming, but as yet nothing has been received.

So lesson learnt - don't leave it til the last minute to order online, just in case it is damaged.  The stress levels when emergency shopping is not worth it :-)


Congratulations L and D.  Hope the coming years are filled with happiness, sunshine and cake.

Making me HAPPY last week

I am purposely late this week.  I had decided not to post that the horror of last week was too great and that I didn't have anything to post.

But then, Anni made me smile and H and I are ok.

So those are my 2 things.  Hopefully normal service for H and I at least will resume this week.

No winners

Sorry for the lack of posts but I am not feeling very happy at the moment.  I did dither whether to post anything at all but have decided that if you are to blog you should be open and honest and no-one is ever just happy go lucky.  I'm thinking that most of us have negatives in our lives.

Saying that I am not going into too many details as you never know who is listening!!!

I am however feeling sad, disappointed, angry, frustrated and generally fed up.  One of H's brothers has attacked us on FB on a private message (PM).  Now copying the entire family into it makes a PM a complete joke but what do I know.  It amazes me that the attack is so one sided, all "my" faults, oh to be so perfect - must be a difficult life.

It frustrates me that whatever we do now will be wrong so we have decided rightly or wrongly to do nothing, say nothing, not reply at all.  This does mean there is a real possibility that the family will no longer exist in the future again and that saddens me.

I am also so angry that I can let other people make me feel so bad when I have not done anything wrong.  To intentionally go out of your way to hurt someone, well is that someone we need in our lives??????

Anyone got that rather famous watch that says "Don't let the buggers get you down"?  I think I could do with a copy................