Admitting

I need help. In so many ways, at the moment, I need help. It's an interesting concept especially when I count myself as very resilient, mildly effected by MS and very lucky in so many ways. But at the moment it sometimes feels all too much.

I noticed the week before last that I was getting very tearful very easily but put that down to the fact that as normal my mood had dropped with the onset of a relapse. As the week went on I realised it was worse than it was than last time and that I was worrying about how much I was moaning about it all to B, making me more tearful. I contacted my MS Nurse about the relapse and the tearfulness and she provided me with the number of a counselor from the local MS therapy centre. I am hoping that all I need is someone to talk to as I am feeling fine some of the time and am seeing her next week for a chat.

I am finding it hard to get things done at the moment so am worrying about things not being done (viscious circle....). I needed to get fliers out for an event I have been helping to organise and that was worrying me, I needed to get save the date cards printed and sent out for the wedding and there is always so much that needs doing around the house....... So I decided to take stock and following a conversation with my parents I have ordered all the wedding invitations including the save the date cards. I did the fliers in stages and B and I have decided not to buy anything else that needs actioning for the house so I don't feel bad about it not being done.

I was really not enjoying my job which was not helping - that has improved grately over the last week as I have my own work to do now so fingers crossed that won't be a big problem for the time being.

So, although I am not as good as I'd like to be I am taking steps in the right direction. The hardest part of all this was realising that actually what I was feeling wasn't right and that I could do with some help to help me get some perspective on things and to make sure I don't get myself into a proper pickle without realising it. I never thought I would need help. I am strong, I bounce back - and I will again - just with a little help (nearly broke into a Beatles song then.....!!!!) :o)

Tired = Migraines = naff week.......

I've had a somewhat busy couple of weeks which I think may have led to my being totally exhausted for all of this week.

Lat Friday was the Unum Summer Party, which was very good, had a couple of drinks but not too much - we had £40 worth of drinks vouchers between us - generous company! We went to our hotel room at around 12:30 which is really very late for me and were then up and out by 09:00 for shopping and getting home as we were expecting a bed delivery from Argos.

We then managed to get quite a lot done over the rest of the weekend, cleaned out Plum and the fish - they really needed a clean! We also painted the 3rd bedroom, Mum came over and helped as well! After all that I felt alright but this last week has just been really, really hard work.

Had a migraine on Monday but I got rid of that and had my first ever golf lesson! We had dinner out after that so got back half 9 ish - when I went to bed. Felt ok, if tired on Tuesday but had to go to Dorking for the day. The drive was quite tiring but on the way back I took the opportunity to pop into Bracknell Ambulance Station. There were loads of people there so it was really great to see everyone. Only problem was that on Wednesday when I got home from work having had another migraine, having a headache and being really, really tired I ended crying about what I'd left behind, the migraines, the fact that I was crying and feeling ill AGAIN and why would B want to be with me. All that sort of fun stuff. I was just very very tired and felt much better after getting some sleep. I've been in bed by 20:30 for three nights in a row now so am catching up slowly.

So all in all a pretty naff week. I have emailed my neuro about getting some medication to try and prevent the migraines - from posting on the MS Society board beta blockers look like they might be the way forward, but I will wait for Dr W's advice.

We are out tonight at a friends Wedding Reception but I don't plan to be out late and as I am driving I can leave when I like!! I have decided a short trial without alcohol may be a good idea to see if there is any reduction in migraines/headaches. I started a week ago after the Summer Party and will drink again on the CAMRA Beer Festival we are attending at the beginning of August. May also be good for the weight loss!

Anything else interesting? Work is going well although it is going to take some time for me to adjust to a desk job. I had an ergonomic assessment on Monday and will probably be getting a new chair if not a couple of other things. We are going to organise another meeting to discuss both reports and then include my line manager. Other than being tired I'm not having MS problems which is great - just need to get a handle on the migraines.......

Useless B******* woman......

Was ringing around yesterday making sure everyone had everything they needed with regards to my house sale. Yes, everything is going fine. 10 mins later, really sorry she (Lucy and yes I would love name and shame her) doesn't want the place anymore only she hasn't bothered to tell anyone. Really......when did you decide? Why didn't you tell anyone.....?? So I burst into tears in the office, pulled myself together, called Romans and Andy* is putting it on the market for me. Hopefully he is selling it as I type. In some ways I am just pleased something has happened as I was getting stressed about it.

I had to tidy and get rid of all the junk from my place as I wasn't worried seeing as Lucy didn't need to see it, that took me 3.5 hours at which point I went out to the Maidenhead MS 18-40 ish group for the first time. During the tidying I managed to fall down the last few stairs of my staircase and pulled my shoulder, back and hit my knee on the radiator at the bottom (I was concerned that the radiator moved...) hence I am at home recuperating with extra tiredness, enhanced symptoms and an achy back, shoulder and knee......

Other than that things are bumbling along. I saw Occi Health Monday, they think I should see an OH Dr after speaking to my Neuro so we can have a conversation about my job. I think I have already decided to change as I spend half my time putting pressure on myself about making a decision and the other worrying about whether I am making things worse, etc etc etc (I could go on...). Work is ok, just about have enough work to fill my time and its all experience!

Oh, my car passed its MOT yesterday, good bit of news at least. The fun part was changing the disc brakes.

**NOTE TO ALL PEUGEOT 307 1.6s OWNERS**

Your Peugeot may have brake discs and pads usually associated with the 307 1.4. The discs are 266mm thick not 283mm thick as most retailers of parts seem to have on their systems and therefore the pads are also different to the registered part. Mine is a 53 reg (Jan 2004).

We eventually got the right parts and Dad fitted them no problem, just a shame that an hours job took nearer 3 with the tooing and froing....

Anyway, I'm off to get dressed (yes its nearly 1400..) and get some lunch.

Going backwards.....

Went to work this morning despite feeling horrible and knowing that the feeling in my legs is getting gradually less and my balance is getting worse. I nearly rang in sick but thought, one more shift then I can get home and lie on the sofa for 4 days. When I got to work I kept thinking I shouldn't be there, and then when it came to starting work I ended up in tears and talking to my station officer. I am now on a couple of days sick and will go back to work on Monday on light duties, back to the same office I was in last time.

My legs feel the same as last time when they were bad but I haven't had the gradual change in sensation as last time, things have got worse very quickly. Still I'll spend some time on light duties, hopefully get better and get back to it. I think I'll have a proper think about what else I can do in terms of a job over the next few weeks. I have been thinking about it loosely over the last month or so but I haven't got anywhere.

So anyone any ideas.......I would like to work shifts but not nights and not past midnight and would like to get out and about but not as much as this job....... Ah well, I think I am employable so will find something if I have to!

Couple of things

It's December, how did that happen.....? I am still saying its not Christmas from time to time but I am coming to the conclusion that I'll have to give in to it at some point. Even got the Christmas decorations out of the loft!

It's been one of those weekends, we were all very very busy, all crews late off every day......so good for the morale...... I started the weeks shifts badly with a migraine by about 9am Thursday and got myself in a pickle in the evening when feeling sorry for myself, asking for reassurance from B and him changing the subject nicely. I did then corner him in the car and tell him what he had just done and then cried....... He just expects me to know that his feelings don't change and that he is coping with me fine. He tells me regularly that he loves me but sometimes I'll ask for the reassurance and he doesn't always get why I need it. Still we chatted in the car as we do and sorted ourselves out. I hate being needy........

Anyway, had a couple of interesting jobs, an actual ill person and my first encounter with an MS pt on the road.

I'll start with the ill pt, I have see very few really ill people recently and then the one I do see I can do very little for him other than get him on the ambulance and get him to hospital quickly. We were given a description from control that led me to believe our pt would be having a CVA. When we arrived we realised there was a Dr on scene - nice to be told. We got upstairs (as always) to the pt and at that point I decided this was not going to be good. The GP handed over, yes CVA, onset of headache had been about 6 hours previously and the pt was now more or less paralysed on the left side. The GP very helpfully had written an unintelligible letter but neglected to do any observations or get the pt on oxygen. D went straight down for the chair, I put the pt on oxygen and checked his pulse and then asked the GP to hang around and help get the pt on the chair. The GP went and got his driver to help as well. There was no way I was waiting for another crew.

We got the pt on the chair and to the ambulance, he was still making some communicative effort but was very unwell. We rolled the pt onto his side in case he vomited, did obs and an ECG, got the wife on and got underway to hospital. After a couple of attempts I got through to control to put in the courtesy call, stressing the unwell nature of the pt.

On route the pt vomited a couple of times, the second time was about 5/7 minutes away from the hospital, I had to suction then checked the pts pupils again. He had a pin point pupil and a dilated pupil. I tried to get a response from the pt, he was now GCS 3. I tried to insert an airway but he had clenched his jaws and was at the wrong angle for an OP. When we arrived at hospital they had a team ready but called a few more people down once I told them he was GCS3 most of the time.

By the time we left he was tubed and ventilated and ready to go off for CT but not expected to survive. I had been honest with the wife on the way in so she was fully aware and had thanked me for being honest. Our pt was nearly 70 but had been doing a full time job the week before and playing golf on the good weekends, such a shock for everyone in the family.

When we went back the next morning with a pt I asked after him, I was surprised to find that he had survived the night but died the next morning. I wish there was more we could do but what...??

The lady with MS was not ill but relapsing and no longer able to cope. I found meeting her hard, I know MS has no guarantees of anything but the possibilities...... No longer being able to control your arms, legs, bladder etc...... I wasn't sure what to do with her but she was at the end of her tether and wanted to go into hospital so I took her to A&E and let them know that she was under the neurology team there. Another thing I found upsetting was that she knew very little about the condition she had been diagnosed with 9 years ago.

On my day off I managed to nearly finish my Christmas shopping and meet a friend for coffee, was a good day!!

Roller coaster, coming up!

So, roller coaster goes down, roller coaster comes up. I hate roller coasters.........

Since my last post I am feeling better. I went to work and spoke to my supervisor about the stupid decision I made, well actually I burst into tears and then spent the next 20 mins either crying or nearly crying. I should say sorry to D my Supervisor who bore the brunt of me getting a lot off my chest.

I have been referred back to my Occi Health Dept by my manager as I have been off sick for a week and had two shifts when I have been home from work sick since I went back to work at the end of July. I am very rarely off sick...... I see their point but I want to make it clear that I have no intention of making permanent decisions about my future at the moment. I need to be given the chance to work the short shifts, get over this relapse and give the meds a chance to work. I fully understand I may have to make decisions about my future that I don't like but now is not the time.

So feeling better, have had a couple of good shifts at work - may write about a couple of jobs soon - and am more positive!! I wonder how long till the next dip........ ;o)

Stupid decisions......

Life seems to be a bit much at the moment. After all the positivity when I got over the last relapse it all seems to have gone pear shaped. It doesn't help that I was stupid at work last night as well.

After two weeks off and a lovely weekend away (which I will elaborate on) I went back to work for three day shifts, 0830/1800. On the 3rd shift I developed a headache which eventually turned into a migraine. I have never experienced anything like it. B had to come and pick me up from work, I have always been able to drive myself home with a migraine. I burst into tears in the crew room, S had to ring control and let them know I was going sick (thirty mins before the end of my shift...) and D had to ring B for me as I was crying too much.....

Once I got home I went to bed, felt like I was dying (I know overly dramatic but I wanted to rip my head off) and eventually felt able to take tablets and then felt a bit better by 11pm.

Unfortunately the migraine tipped me over the edge at work, cried there, cried on the way home, cried with B on the sofa, cried with B in bed. I then asked him to leave me to it as I needed to sleep. I am now wondering if I should be doing my job, if I can do my job, do I want to be doing my job...... I know its all because I'm not coping well at the moment, as I am sure I have said before I hope I will feel differently sometime soon.......I really do........ I felt sooo much better after two weeks off and going back to work has undone most of that.

I just hope I have a better shift at work tonight as that will help my confidence there and make me feel happier. I just don't know what to do with myself at the moment.......

I'll write about my weekend away, it might cheer me up....... We went to Shrewsbury, a Mercure Hotel, for two nights, just us, for a dirty weekend! We left before lunch on Friday and took a leisurely drive up the country. We stopped in Shrewsbury for 'supplies' and a coffee and then went on the hotel. The grounds were gorgeous and the hotel looked like a country manor. The room was really nice as well, the bed wasn't as big as the one in Bristol but big enough! We ate in the hotel both nights, lovely food!! We went out Saturday for a few hours to Hawkstone Park and Follies - lots of walking up and down hills and steps, which I managed without a problem - very pleased with myself!!

On the Saturday we had been together 9 months, for 5 of those we have been joined by MS and I have been having problems for 7 months - where did I find him hey?!? Anyway, both evenings before and after dinner it was just us, together, chatting, cuddling, being naughty. It was lovely, just what I, we I think, needed.

Oh, brain not functioning, have no idea what to do with myself.......................

Feeling Sorry For Myself..........

I have felt pretty awful since Tuesday last week. I had to leave work early on Tuesday - an overtime shift - which I have never done before. I hadn't stopped for over a week and a half until yesterday. I have had headaches, migraines and felt generally yucky. Yesterday everything got too much. I was ok to begin with, then got a nasty headache and started feeling very sorry for myself. Nearly in tears a few times throughout the day, especially when B got home. Not his fault, I just worry a lot about the fact that I seem to be lurching from one thing to the next at the moment.

He keeps telling me that he loves me and wants to be with me but I can't help thinking why would he want me? I seem to spend half my time not feeling well, I get through work and then end up tired on the sofa, or in bed early. When I put my sensible head on I think well actually I was fine until I relapsed again, going out for dinners, cinema etc It doesn't make it any easier though. I have this constant nagging going on in the back of my head. I also don't want to keep saying it to him as I will start sounding like a broken record. I hate feeling like I need something, even if it isn't all the time.

What really prompted all this was waking up Sunday morning and realising that I have Optic Neuritis. I got through Sunday, I had to. Told D at work, told B in the evening and then woke up Monday morning and had to deal with it on my own. Its not bad, no real effect on my vision and mild pain. Nothing like last time, its just too close to being something that could take me off the road again, which scares me. There it is I am scared. Scared of loosing B, scared of not being able to do my job, scared about the future, just plain scared. I guess when this relapse clears up I will be back to my normal self - just feeling very sorry for myself at the moment.

On a lighter note B's parents visited at the weekend. I was at work both days but made it home at a reasonable time. We went out for dinner Saturday night and B cooked Sunday night. We are meeting them in Bristol next weekend for a nice meal so that should be good as well. B's Mum did some weeding which really needed doing! B and his Dad put up the shelves in the shower, typical Man thing with the instructions but they got it up in the end!!

I had my first full dose of Rebif yesterday morning, 44. I had a headache in the afternoon which may or may not have been caused by the Rebif, I will keep an eye on things. I took it in the morning as I am at work Wed evening and don't really want to be taking the high dose at work, just in case I have any problems. If I get through this week ok I will start taking it at work again.

So all in all some good times and a fair few bad times this last couple of weeks. I will pull myself together at some point.

Crying

Showed the cracks again yesterday. About 5 minutes after B and I headed off to do shopping for tonight I started getting ratty with him. I have no idea why..... I apologised when I realised and was suddenly much nicer....... I don't do mood swings....... Then when we got home I asked why B had done the hoovering when I said I would do it. One of my jobs, he said he didn't know when I would be back and if I would be capable of doing it. This was the statement that got me. Assuming I wouldn't be able to do it when I got in. I know I wasn't well the day before but I had said I felt fine in the morning before I went to work.

This is when the tears started. I hate it when I cry, I have never cried this much before. I cried for a couple of hours when I got dumped once and I have cried at work but never this many times in 2 months. B just held me and said sorry for the comment, which he didn't really need to, I shouldn't have reacted like that to a simple comment. There is another comment that has been swimming round my head recently, we were both a little tipsy when he made it and I think he was joking, so seeing as I was already in tears I decided to bring it up as well. He put my mind at rest about it.

Once I'd had my little cry I said sorry lots and we carried on with the dinner. I do worry how much of this he'll put up with..... How long will I be 'emotionally unstable' for?? The worst thing is it sneaks up on me........

Anyway, feeling a little better today although I think I am possibly one word away from tears again.....

One Hour.....

Today has been what can only be described as emotional. I had an appointment with my consultant at about 10am to get the full results of my scan. I had a feeling it wasn't going to be good because she checked I was bringing my Mum....

We arrived at 09:45 to find a patient had canceled and we therefore got their space. The basic gist is that by 10:45 I walked out of the consultants room knowing that I have Multiple Sclerosis, obviously not what I wanted to hear but then it could have been worse. On the plus side I got to see an MRI of my brain! Yes there is one there and its generally healthy!! I'm obviously not ignoring the MS but it was fascinating, I saw my eyes and ears and CSF ventricles, very interesting. There was nothing on the MRI of my C-spine so I didn't get to see it..... I had blood taken to test for everything under the sun and have to go to the JR (John Radcliffe) near Oxford so they can aim stuff at my eyes and test for inflammation there. Then its an appointment to see another consultant about Interferons for the MS. So much fun!!

Hopefully this episode of inflammation will go away in the next couple of months and I can get back on the road. Will have forgotten everything already anyway. Every extra day is just compounding it! I have steroids to kick start things as my body is being lazy, I have to take 500mg Pred every morning plus Omeprazole. So fingers crossed I get my hands on the unsuspecting Berkshire public soon!!