Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Hi all,
I know everyone has different issues too. It is winter here & I have been struggling with a virus that I have had for 4 weeks. Have been coughing, losing speech, can't swallow a lot of the time. Hot/sweaty/cold/chills, hurt everywhere. Just finished 3rd course antibiotics for it,Can't put basic sentences together. Can't remember how to do basic things that I should be able to do.
Fall over heaps. having black outs (form of epilepsy caused by ms), can't think of words when I am trying t talk to people. Say the wrong thing to people (too often) & the friends I have left are starting to get p'd off with me too.
Haven't been to the ms physio group & coffee after for weeks as just too cold to get myself into gear & get in there either on the scooter or taxi in the morning on my 2 days off & don't want to spread the virus to others but this is making me feel more more cut off. I know not doing my exercises & getting out is making me feel even worse but I really don't want the others to get sick too. Didn't go to work at all last week as just couldn't get up to get ready & go in, barely speak etc etc. Felt sorry for myself all week.
One of my close friends is struggling with chemo treatment from cancer & I can't go & see her, only speak to her on line & I feel like I am failing her as she is the main one who always comes to see me when I am sick, in hospital etc. She says she understands & doesn't want to catch my bug either but then says how she now understands what I mean about people stopping visiting etc when you have been sick for a while as she is not seeing many of her friends etc. I can't drive so even if I put a mask on I can't visit her. Is she having a go at me or am I being over sensitive? I chat to her every day (almost if not) on line & text message on mobile phone too.
This week I have got to have Botox injection in/near my right eye tomorrow morning. Getting picked up by red cross volunteer driver (have never had to use them before) so don't know who is taking me or bring me home & get nervous with strangers driving a lot. Didn't have any friends or family (only got my Mum) to take me & couldn't do bus to train, train to city, train to near station to hospital, bus to hospital so long trip. Don't know if Botox is going to hurt or if I am going to have to wear a patch over the eye for short/long time after. Hoping Botox is going to help ease pain in right eye & open eye, stop frequent clinking etc. Can't remember what I have for Tuesday, Wednesday is work & Friday I have got a mri at the hospital for head (I think) which is about 1 hour. Will get a taxi from work on wheelchair to hospital & same back to station after as we are going to have yucky weather. This also means will be a late train home, probably about 1 hour mri (if on time about 5pm train), train takes 1 hour & its dark by about 4.30-5pm at the moment. Will need to get a taxi home again from station as we don't have an way to put the wheelchair in the car yet. Following Friday have got spinal & thoracic mri at 9am at the hospital, so again bus-train-train-bus to get to hospital then that mri could take 1-3 hours, they are not sure how long. Then I am supposed to go to work after that, means will need to finish later to cover for getting in late to work.
There is just so much happening in the next couple of weeks, I don't know how I am going to cope???
I go back to the Neurologist 3 weeks later on 2nd September to get all results of mri's & 29th August to Othomologist in at the hospital too. haven't rung up for driver for that one yet & need to do that, probably should have done it already but can't seem to organise all my appointments & then transport as well is just one more thing to do & I am struggling to cope with it all. It is hard enough to organise the appointments & the transport is just making it even harder.
I have always coped before, at the moment I just feel like it is all just too much for me & I feel like screaming. I have tried to get the social worker from ms society to help but she says it is up to the government to organise a "care plan" to give me carers to help, they say I need a social worker to justify my needs & I am on the "wait list" & have been for 12 months already. It is just too hard. I am trying to cope, to continue work 3 days a week, appointments other days.
I don't know if this has made sense or not, just needed to vent.
Hubby can't help with appt's as he works full time too & doesn't have time to phone when he drives trucks all day etc.
Feel like giving up work just to make it easier to fit in appt's but don't want to do that as value being with other people too.
Thanks for letting me vent. It is just too hard when I look at all my appt's. Also got hearing tests, massage, social worker, physio assessment, & other appts to fit in too.
Please just pray for me, send positive thoughts whatever your ways are for the next few weeks.
Thanks.
I know everyone has different issues too. It is winter here & I have been struggling with a virus that I have had for 4 weeks. Have been coughing, losing speech, can't swallow a lot of the time. Hot/sweaty/cold/chills, hurt everywhere. Just finished 3rd course antibiotics for it,Can't put basic sentences together. Can't remember how to do basic things that I should be able to do.
Fall over heaps. having black outs (form of epilepsy caused by ms), can't think of words when I am trying t talk to people. Say the wrong thing to people (too often) & the friends I have left are starting to get p'd off with me too.
Haven't been to the ms physio group & coffee after for weeks as just too cold to get myself into gear & get in there either on the scooter or taxi in the morning on my 2 days off & don't want to spread the virus to others but this is making me feel more more cut off. I know not doing my exercises & getting out is making me feel even worse but I really don't want the others to get sick too. Didn't go to work at all last week as just couldn't get up to get ready & go in, barely speak etc etc. Felt sorry for myself all week.
One of my close friends is struggling with chemo treatment from cancer & I can't go & see her, only speak to her on line & I feel like I am failing her as she is the main one who always comes to see me when I am sick, in hospital etc. She says she understands & doesn't want to catch my bug either but then says how she now understands what I mean about people stopping visiting etc when you have been sick for a while as she is not seeing many of her friends etc. I can't drive so even if I put a mask on I can't visit her. Is she having a go at me or am I being over sensitive? I chat to her every day (almost if not) on line & text message on mobile phone too.
This week I have got to have Botox injection in/near my right eye tomorrow morning. Getting picked up by red cross volunteer driver (have never had to use them before) so don't know who is taking me or bring me home & get nervous with strangers driving a lot. Didn't have any friends or family (only got my Mum) to take me & couldn't do bus to train, train to city, train to near station to hospital, bus to hospital so long trip. Don't know if Botox is going to hurt or if I am going to have to wear a patch over the eye for short/long time after. Hoping Botox is going to help ease pain in right eye & open eye, stop frequent clinking etc. Can't remember what I have for Tuesday, Wednesday is work & Friday I have got a mri at the hospital for head (I think) which is about 1 hour. Will get a taxi from work on wheelchair to hospital & same back to station after as we are going to have yucky weather. This also means will be a late train home, probably about 1 hour mri (if on time about 5pm train), train takes 1 hour & its dark by about 4.30-5pm at the moment. Will need to get a taxi home again from station as we don't have an way to put the wheelchair in the car yet. Following Friday have got spinal & thoracic mri at 9am at the hospital, so again bus-train-train-bus to get to hospital then that mri could take 1-3 hours, they are not sure how long. Then I am supposed to go to work after that, means will need to finish later to cover for getting in late to work.
There is just so much happening in the next couple of weeks, I don't know how I am going to cope???
I go back to the Neurologist 3 weeks later on 2nd September to get all results of mri's & 29th August to Othomologist in at the hospital too. haven't rung up for driver for that one yet & need to do that, probably should have done it already but can't seem to organise all my appointments & then transport as well is just one more thing to do & I am struggling to cope with it all. It is hard enough to organise the appointments & the transport is just making it even harder.
I have always coped before, at the moment I just feel like it is all just too much for me & I feel like screaming. I have tried to get the social worker from ms society to help but she says it is up to the government to organise a "care plan" to give me carers to help, they say I need a social worker to justify my needs & I am on the "wait list" & have been for 12 months already. It is just too hard. I am trying to cope, to continue work 3 days a week, appointments other days.
I don't know if this has made sense or not, just needed to vent.
Hubby can't help with appt's as he works full time too & doesn't have time to phone when he drives trucks all day etc.
Feel like giving up work just to make it easier to fit in appt's but don't want to do that as value being with other people too.
Thanks for letting me vent. It is just too hard when I look at all my appt's. Also got hearing tests, massage, social worker, physio assessment, & other appts to fit in too.
Please just pray for me, send positive thoughts whatever your ways are for the next few weeks.
Thanks.
Still can't walk far, strength low etc etc.
Take care of you
hug hug hug
Didn't go anything like I thought it would, that's an understatement.
Fast forward to today. I have still not fully come back to any good standard after the flare up, not helped by a virus for the last 4 weeks too. Right eye has had poor vision - blurred & cloudy all the time & very rarely opens much at all & constantly blinking fast. The left eye has started to do the same recently too but I have tried to ignore it.
Today I went in to the Royal Melbourne Hospital for Botox treatment on right eye (or so I thought). The Dr's reviewed my eye's, discussed Botox treatment on 1 or both eyes which shocked me to put it mildly. As the Dr's do they discussed it between themselves & decided that I needed the Botox for both eyes, different doses the stronger being for the right eye of course. What surprised me was that the Dr would/could not tell me how deep the needles would go in or hurt. All he said was to relax so that the needles would not hurt in the eye.
I tried to relax but the first injection did hurt in the right eye lid (near the eye ball). That one hurt, the rest didn't hurt much at all, very minor stings/pricks, could feel them but didn't flinch for most. They varied from above the eye, right at the eye ball, under the eye ball & on the eye socket underneath as well as in the corner of the eyes.
The Dr did explain the risks & possible things to look out for. I will probably have black eyes when the bruising comes out on/around the eyes. The eyes may become dry in which case get eye drops from the chemist to moisten the eyes. Another possible effect could be that the eyes wont close properly too, again eye drops to moisten should fix that. As he said they have to warn you about the possible risks but they are not common.
Don't know how effective the Botox will be or how long it will last so just have to try it & see if it helps. Eye drops have not helped as they don't stay in when eye would not stay open. I am hoping it will work, help & last too. I go back in 4 months to see them & review it all.
Tonight the left eye is very watery which was not unusual but it is more so, both eyes are a little bit sore but not too bad. I will keep you updated.
One thing I didn't expect to happen today is a bad seizure/fit. I have been having them for probably about 1 year & been told ms is the cause. Apparently I did "blank out" (eyes open but no response to the driver for a couple of minutes on the way home.
Later today I know I have had a worse one at home as leg bag was full (very shortly after emptying & I often lose bladder when I have any kind of fit), anyway I was sitting watching TV & I literally jerked quite forcefully upwards on my chair & almost off it. I have only had these sort of fits a few times. It is quite scary to have any sort of fit/seizure & these one's are getting even scaryier. Don't know if it has anything to do with the Botox or not. Will keep a record & hope it doesn't happen again.
Lets hope the Botox is worth it & doesn't cause any bad reactions too.