Apologies but this is another 2 week in 1 post update ….. once again it will ping around a bit and explain itself towards the end I hope
Last week : Good grief but I’m emotional this week. I can’t seem to listen to a song that doesn’t strike emotional chords and make me want to bawl my eyes out. It’s ‘women’s time’ but it’s not usual for me to be all weepy. Perhaps it’s because my 45th birthday is fast approaching and once again I’m terribly aware that my family are gone (typing that and I’m filling up again – conclusive???)
It also it might be nerves as tomorrow we have the home visit / assessment day with fostering services to see if they are willing to put me forward to the fostering board for approval as a foster carer. (note to self must FINALLY unpack that last box in the spare room when I get home tonight ….. we’ve lived in the house for a year and a half – it’s really is about time the boxes were unpacked)
It’s actually a really packed week all things considered this week, physio tonight, BlueSky tomorrow, a NYAS get together on Thursday in Wokingham dog walking and that annoying work thing too - by the weekend I’m going to be fit for nothing but a long lazy rest.
Still no news from the team about how the MRI went. I’m hoping that it’s all as planned and no news is good news.
NYAS on Thursday was cancelled as a result of ‘Storm Doris’ who I have to say was best described as a nasty bitch ….. 9 flattened Fence Panels 8 snapped fence posts and luckily for me I asked next door to move his car BEFORE the 3 panel section complete with posts collapsed into the driveway where his car had been parked. It’s looking like the repair / replacement fencing will cost approximately £1300 but by replacing the lot at least once it’s done the damn thing won’t come down again.
Oh dear – well that wasn’t a good start to the week, I got home at 01:30am from The Royal Berkshire Hospital having spent a good few hours having ECG’s, X-Rays and blood tests.
This will probably make those hardened MS’ers of you laugh out loud at my clear naivety but I guess it’s all a learning curve when something new pops it’s head over the top of the MS parapet.
I was preparing Sunday dinner when I moved my right arm to put something in the oven I suddenly had a pain on the right hand side of my chest which felt like I’d been punched ‘inside’. I went and sat down thinking it would go away, but the next time I got up and moved around it was worse, breathing was difficult a deep breath felt like it burned inside and it didn’t seem to be enough air going in and what was going in was all going down the left hand side.
I honestly was terrified. The armchair medical expert in me immediately started thinking about lung problems and in a few short minutes ………. well all things considered that didn’t help with the pain in my chest or the difficulty breathing at all.
The X-Ray was ordered to see if I had a Pneumothorax – I didn’t need to google this as I’m all too familiar with what that entails – watching it happen to my mum was horrible - All clear though and I was finally discharged with a suspected muscular strain potentially with a chest infect (maybe) – At this point apart from chest pain and struggling to breathe I don’t feel ‘ill’ and the Yorkshire Pudding tray was hardly heavy enough to injure me putting it in the oven.
Aaaaaaanyway enough of this nonsense – if you haven’t guessed the punchline for this yet, I sat in the car on the way home running through whether MS was likely to be the root cause of the problem. I sat in the car and ran through all the MS symptoms I’ve had and then the ones I haven’t and there it was staring me in the face the completely inappropriately named MS Hug ……..
Hug my arse – it feels like my right lung has collapsed and it’s incredibly painful.
It’s actually reassuring to discover ‘it might only be MS’
It’s a little bit terrifying because it’s a ‘new symptom’ and I still don’t have those MRI results back yet so potentially this time it not come back with NEDA (No Evidence Disease Activity) – got to prepare myself for that I guess.
Whatever happens it will be okay ….. anything else is simply not acceptable.
Thanks for your helpful blog, I am planning to start on March 27th with Lemtrada. Good luck with your MRI result. I have not had one NEDA in 2 years- now on 4 monthly MRI last one had brain stem lesion... hence Lemtrada (after Gilenya and Tecfidera couldnt' hold it) so I understand your anxiety entirely. BTW never had a headache with MRI - usually fall asleep. Maybe its the brand of contrast they use? In Australia, in Adelaide anyway, they only use an expensive one because it has less allergic reactions and is less likely to cause kidney dysfunction. Just a thought. Once again thanks so much, you have been amazingly helpful for me.ReplyDelete
Thank you for the comment, good luck with Lem, if you need a wierd English friend to talk to the wonders of facetime and skype are always there. Sneak preview for you as this should email you to say there is a reply ...... I got another NEDA :-) WHOOP WHOOP *DOES THE HAPPY DANCE* XXXX
Thanks Tracey, I'm very happy for you. I'm also weird and English ha ha!! Funny how we all have these little 'back up plans' going on... though I would never be brave enough to do HSCT I have been offered a place in a trial - but I don't think I would pass the medical... if you had to do that maybe you could apply for a place in a trial in Melbourne or Sydney. we are supposed to be 'reciprocal' with the NHS after all. Be a bit cheaper than Mexico or Russia I think. Doesn't sound like you'll need it anyway, I am soooooo encouraged.ReplyDelete
I'm a 'project manager' risk mitigation is what I do in everything. HSCT is 'the last resort' treatment to my mind, if all else fails and all that. Having followed Karen's treatment on the FB group I have to admit it's less scary now, and having seen how she was cared for in Moscow I think I'd rather than than the NHS (bad disloyal Tracy)Delete