I’m having a bad day, feel the need to rant. I started gilenya 3 days ago and so far so good, few little side effects - but nothing compared to the awfulness I felt on rebif. I am just really struggling with fatigue and nobody seems to understand that. Also in the middle of moving house (stressful isn’t a strong enough word). Got so much packing to do, 2 children to look after, removal company’s to deal with and my father has turned up from Ireland for a few days and wants entertaining (until the pub opens then he’s off like a shot) It’s also my anniversary today, been married 5 years, haven’t bought hubby anything, there’s no food in the house, no energy to get out. Struggled to wake up today and all I got from him was, what do you want me to do: cancel everything so you can have a lay in? No that’s not what I want but a bit of sodding understanding wouldn’t go a miss. He’s usually good, but feel his sympathy is waivering, think he thought gilenya was a cure! I don’t know what I’m getting at here, just fed up. So much to think about think my heads going to explode, then get snappy with the boys and it’s not their fault, so in creeps the guilt. Maybe tomorrow will be better.
Aww - bless you. I wish I had some sage advice for you, but wanted to give you a great big (((HUG)))
Happy anniversary, I really hope your day picks up. Maybe order a big, fat takeaway for dinner?? xxxxx
Thank you xx
Maybe ask your father for some help with either the packing or looking after the children while u have a rest. Maybe do an online shop or send father out with a list. I hope hubby treats you to something really special for your anniversary and I really hope your day gets better.
Maybe ask your father for some help with either the packing or looking after the children while u have a rest. Maybe do an online shop or send father out with a list. I hope hubby treats you to something really special for your anniversary and I really hope your day gets better.
Takeaway sounds good to me. And set your father to work: if he has a list of tasks to get through before they open, he might be Mr Efficiency!
Moving house is just ghastly. Hang on in there - it won’t last for ever.
Alison
Thanks Alison, I’d probably end up re-doing anything I asked him to do, so best I go it alone…just want him out from under my feet! Takeaway does sound like the best option…just got to find the cutlery! I’m never moving again!
Make it a pizza - no cutlery or washing up - bingo!
Emma x
Here’s a <> from me too.
It’s exciting to start a new drug and our nearest and dearest do expect it to be a miracle but of course it takes a while for it to build up in our bodies and in the meantime our bodies have to get used to it. I found the first week on Gilenya was quite tiring and I felt unusually cold all the time. I’m not sure whether that is because of its effect on the heart or what but it was unusual for me as I had spent the previous 5 years being too hot. Thankfully I only share my house with my 20 year old son who is quite happy to eat takeaways or ready meals and doesn’t care if I’m snuggled under a blanket as long as he has plenty of snacks and gets fed once a day!
Moving house is exhausting at the best of times and when I moved house a couple of years ago I spent the whole 6 weeks of my summer break from my school job packing so I could pace myself. I also paid a month’s rent on 2 houses so I could take my time moving from one to another as I knew I would need the odd duvet day. Any visitors that summer were either set to helping wipe down the new house or pack in the old house. If they didn’t like those terms then they weren’t welcome 
I’d wager that if your father and your husband had just started on a new drug and were dealing with all the stress that you have at the moment, they would expect some understanding and some down time! Yet us women are expected to soldier on without a word!
I hope you enjoy the rest of your anniversary and hubby is a little more understanding. It’s a shame that this illness is so invisible because if they could see the damage inside our bodies they wouldn’t be quibbling about how bad we feel …
Tracey xx
Thanks everyone for your support yesterday. Hubby came home with loads of apologies and lots of new decorations for our new house he thought is like. I ordered his fav pizza, even found a candle and lit it! Feeling much stronger today, even told my dad if he’s not helping not to come! So thanks for all your kindnesS and understanding. X
I’m so glad you had a lovely evening and you’re feeling better about things.
Tracey x
Glad you’d a nice evening and hubby wAs apologetic. I’ve too move house soon then I’m free from ex. But packing will be a nightmare and with a 5 yr old and 1 yr old I keep putting it off. And there no houses on one level which I wNt as I’m not moving again. Keep thinking how I’ll condense everything into a smaller house grr. Take care and get ur dad to help x