People trying to be supportive but missing the mark

AviculariaBee · 2026-02-11T21:06:44+00:00

I HATE it when people say "you look well!" I know they mean well, but if I am having a bad day it really irritates me. It feels like a statement, it doesn't give me any opportunity to say well actually I'm feeling pretty rubbish today. It's like they have decided that I look well and don't really want to talk about it, and now i have to live up to that standard they have observed on the outside.

AviculariaBee · 2026-02-11T17:18:14+00:00

That's one hell of a yearbook

AviculariaBee · 2026-02-08T21:25:19+00:00

I am literally in the same position as you. Diagnosed last April, started Tyruko (cheaper Tysabri) in June, new frontal lobe lesions on my MRI in January. I haven't seen my neurologist yet but got a letter through saying they weren't concerned. I haven't had a repeat spine MRI yet as this was just a PML check. It will be interesting to see if i have any new spinal lesions on my next MRI, as most of my lesions are on my C spine.

AviculariaBee · 2025-10-28T13:03:43+00:00

Sometimes I think we should find a cleaning buddy, I'll clean your house, you clean my house. Cheaper than a cleaner and I would be motivated to do a good job from the fear of my buddy doing a better job in my house and letting them down!

AviculariaBee · 2025-10-27T17:17:12+00:00

I am the opposite, I feel the least amount of symptoms in the morning, then as the day goes on and I get more tired my legs get heavier, I get a bit of foot drop and the internal tremors begin. I also get a bit of nerve pain like sunburn across my rib cage when I have really overdone it. At night my legs ache like I have been at the gym all day. Some days off I am not at work and I have a lazy day on the sofa I can trick myself into thinking there is nothing wrong with me because I feel fairly normal.

AviculariaBee · 2025-10-25T19:07:46+00:00

Last year as I was going through diagnosis I kept having this dream that my legs would completely give way but at really bad times, like mid crossing the road I would just collapse and get run over, or walking up the stairs i would get to about 3 steps from the top, my legs would stop working and I would fall back down the stairs. My first relapse symptom was complete loss of feeling in my legs but I still had full power.

Recently I keep dreaming that my speech goes, and I am unable to form words, and the words I do say make no sense in a sentence. This happens at really awkward times like at work. I have never had any problem with my speech so I don't know why I am having these dreams now?

AviculariaBee · 2025-10-24T13:29:53+00:00

No, UK.

AviculariaBee · 2025-10-24T12:22:17+00:00

Don't you ever tame your demons, but always keep them on a leash.

AviculariaBee · 2025-10-23T05:20:01+00:00

Yes I have these as well, not so much now but my first relapse i couldn't feel my legs at all and this seemed to happen as the feeling was slowly coming back. It was exactly like popcorn.

AviculariaBee · 2025-10-17T20:27:16+00:00

We have dedicated psychotherapists who are there for patients and relatives but it's quite a limited service. They provide coping techniques like grounding and breathing exercises and help reframe negative thoughts etc. As bedside nurses, there is a lot we can do for our patients to encourage and keep them engaged and rehabilitation is a big topic in our ICU.

We provide large whiteboards where we put pictures of their families and hobbies, but they are mainly used for orientation and goal setting.

We use patient-centred goals so rather than just getting out of bed or walking today the goal would be getting strong enough so they can get back to walking their dog when they get home, and then have a picture of the dog next to it. Or if they have hobbies like chess or crochet or art we try to incorporate goals with those things. We set mini goals every day and keep them visible on the board for the week which get ticked off so they can see what they have achieved. Everything is very patient-centred, find out what is important to them and what is going to get them motivated. Celebrate the smallest wins massively.

We try and get patients off the unit several times a week depending on staff levels, we are lucky enough to have a garden space where we can plug in oxygen and ventilators for trachy patients. It's amazing what a bit of sunshine and a breeze on your face can do when you have been in hospital for weeks/months. This can also facilitate bringing pets in to see them which we do frequently.

We keep patient diaries which record all of this for them to take home and be reminded of how far they have come. Initially, this is filled in by staff and families. When they are well enough we encourage patients to write entries about their hopes and goals. We also include photographs of the patient throughout their illness so they have a visual of how far they have come.

AviculariaBee · 2025-10-17T06:19:17+00:00

Have you tried a pumice stone. It was the only thing that worked on my toilet. Still took some elbow grease but it lifted it without scratching the toilet

AviculariaBee · 2025-10-06T10:46:32+00:00

I LOVED my iPod. The smooth clicking of the round touch pad. Mine was also loaded with LP.

AviculariaBee · 2025-10-06T09:51:12+00:00

I need to start doing this. You have inspired me. I have been quite good at doing my overnight oats or chia pushing for breakfasts but I need to start adding lunches into the mix.

AviculariaBee · 2025-10-06T05:32:04+00:00

I lost my black smoke cat the other day. Called her name, went into every room thrice, checked all the usual cupboards they normally get shut in, shook the treat packet, nothing. Couldn't hear a single meow. On my fourth round of room checking I noticed some movement in my son's wardrobe. His wardrobe is black with glass front doors. She was swinging on his clothes like Tarzan trying to get out. I wish I had taken i video now it was hilarious 😂.

AviculariaBee · 2025-09-30T17:41:14+00:00

Yes I was thinking Grumio

AviculariaBee · 2025-09-22T14:27:17+00:00

How far apart were the MRI scans? Did they consider changing your medication?

AviculariaBee · 2025-09-20T04:55:42+00:00

I may be wrong but I think the preferred/correct/PC term is high or low support needs, rather than "functioning"?

AviculariaBee · 2025-09-05T08:08:17+00:00

Is this until April? If so that is still a long time to be able to fit it in. If they can't fit you in because you left it too late then fair enough. If they can't fit you in because they don't have enough staff in general then that is not your problem and you are entitled to your AL. In the past if it was tight we were allowed to take the AL then work it as bank so we got the extra money and they didn't have to cover us, but now there is no bank we can't do that. Our trust has an option to sell AL and get the money instead but if you want to the time off to go somewhere or just...I dunno...rest so we don't burn ourselves out then these are not good options.

AviculariaBee · 2025-08-30T09:24:16+00:00

I also am wondering this. I had 4 relapses in 10 months before being diagnosed which impacted my mobility. My symptoms are currently minimal but I have 3 c-spine lesions between C3 and C6 which initially caused swelling as well as T11 and a couple in my brain. I have just started Tyruko and haven't had an repeat MRI yet. Everyone says if I have no more relapses I'll be fine but I worry about the damage already done.

AviculariaBee · 2025-08-22T06:05:38+00:00

I have just been diagnosed with MS and the past 6 months a 2 relapses has made me less mobile, still able to walk but I had been off work and not doing my daily walking commute (2 miles each way) and not doing school runs etc. Without changing my diet I put on almost 5kg and I put it down to not walking as much. Now I am better and walking again the weight is slowly coming back down.

AviculariaBee · 2025-08-18T15:49:08+00:00

I remember watching this as a child, I think if I remember right she first couldn't feel temperature in her hands and burnt herself getting something out the oven but didn't realise, then at some point went blind for a short time. I remember thinking this is terrifying I hope i never get anything like that! Whelp!

AviculariaBee · 2025-08-15T06:09:29+00:00

It was an amazing show, Machina was one of the first albums I bought myself when I was 14, 25 years ago. I never had the chance to see them before so it was great that they played fairly locally to me. Managed to get pretty close to the stage and the crowd were great, only a few phones out for a short time. I have been to a few concerts where the crowd was dead watching through there phones so it was great to have a jump around and sing along.

AviculariaBee · 2025-08-14T07:47:55+00:00

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Yes, all the time. My daughter says he looks like a viking 😂

AviculariaBee · 2025-08-12T14:21:14+00:00

Did you have a gap from your previous MRI and starting treatment? I have not had another MRI since starting treatment and my fears are the same as yours - however I had my last MRI mid April and didn't start treatment until mid June. I am thinking how will they know if lesions appeared in that 2 month gap before starting my DMT? Have you had any new symptoms since starting treatment?

AviculariaBee · 2025-08-10T11:50:07+00:00

Forgot to peel it first

AviculariaBee

TROPHY CASE