Needy Rant

Primary progressive MS
1

Hi hope everyone is o.k and powered up to help ole pollypocket,

Update; got disabled parking badge Saturday its got disabled written on it and my photo! didn’t know if i should cheer or cry.

Completed & returned necessary paperwork to try and get D.licence back, g.p &ms nurse will support as only on 2 low dose meds.

Got blood test results B12 within range, Platelets out of range!, g.p said this is common with MS, is this common?

Continue taking Vit D3 5000. I was expecting him to give me something for fatigue,he said no as cause is the MS? As bloods haven’t shown other reason.

I rang my ms nurse crying I’m so tired, new symptoms now in my good leg spasms & 3 of my toes are numb and top of my foot, left arm and hand heavy and muscle pain. Constant head pain past 2weeks.

She said sounds like ive had another relapse if so this would be the 2nd one since Jan, does this happen with PPMS sudden onset of new symptoms? My mobility and fatigue has got much worst. Clinic appt made for me this week.

I had Work O.Health asses last week, Dr concluded I am not fit to work for the foreseeable future, that means 3-6months she told me, next interview is to be held by telephone, as expecting me to travel to the appt is an unreasonable request.

I get the feeling I’m disabled and a bit of a liability.

ME & Those around me keeping saying you’ll be alright, you’ll get back to work, once they’ve sorted your fatigue and other symptoms. IF THE TRUTH BE SPOKEN, NO I WON’T,I see it in their eyes and mine.

Love you loads PPMS familyxxx

Once again thanks for reading my rant.

2

Oh Pauline I’m not surprised you need a rant, you seem to have so much going on at the moment and all of it’s stressful. I don’t think there’s much I can say that’ll make you feel better except that I really feel for you. I vaguely remember a period a couple of months post dx that I also felt that I couldn’t cope with everything, much like you now. All I can say is that things do fall into place in time.

Congratulations on getting your blue badge, and your driving license is in progress and I’m sure it’ll be returned if your doctor and nurse back up your appeal, I’m on enough drugs to kill a donkey yet still drive safely, my Neuro said I was okay. As for work I think you need to take a deep breath and sit down and think your options through realistically. I was devastated when my career as a nurse ended at 43, but I knew I couldn’t manage. Life on benefits won’t make you wealthy and isn’t great for your pride but we’re real examples of why the benefit system is there. All I can suggest is you get a hobby that gives you a sense of achievement, I took up sewing and with charity shops it doesn’t cost the earth for fabric if you use your imagination and recycle.

I hope you feel calmer soon, I think it’s quite normal to hit the brick wall you’ve just slammed in to. At least here we all understand and you can rant freely. Take care of yourself and try to rest, stress really worsens symptoms. Be kind to yourself and allow yourself to grieve. That sounds strange I know but you need to acknowledge that your old life is in the past but that definitely doesn’t mean that life has to be bad now, there is life with ms once you accept it. Good luck.

Cath xx

Sorry for the essay but I really do feel for you and wanted you to know we care xx

3

Hi Pauline… I’m so sorry to hear you are struggling so much. You don’t get relapses with PPMS… but that doesn’t mean it doesn’t go up and down all the time… it does. I’ve been really unwell for a couple of weeks… apart from my little trip to A&E I haven’t been anywhere… but that’s quite unusual for me. Today I feel great and have been round the shops. VERY unpredictable… have no way of knowing how I’ll be tomorrow or even later today. Sometimes with PPMS you get really bad if you have picked up a virus or a bug. You won’t get normal symptoms for say a cold, or flu, or a UTI, but your symptoms will go absolutely nuts and you will feel even more tired than usual. Also of course stress makes the symptoms go nuts. Have a think about that… is something really stressing you out? Just having MS and feeling so ill can add to stress. Think of ways you might be able to lower those stress levels. It’s not easy is it? MS is a very difficult thing to deal with… so you really have to try and get into that ‘one day at a time’ mentality. Don’t think about how you’ll feel tomorrow… as there’s no way of knowing. Just think about how you feel today. What you can do today. If it’s nothing, so be it. I have my bedroom set up for when I have the ‘can’t do anything’ days. Got TV, dvd, books, radio… everything that can make it easier just to give in and go with it. That’s the trick with MS… remember what Nina’s neuro told her… the more you fight MS the more it fights back. Giving into it Pauline can really be a great help. It’s takes the stress out of it. It’s strange that your MS nurse should be using the word ‘relapses’ when she knows you have PPMS. We don’t have them… but remember, it still goes up and down. Write down all your current symptoms for clinic next week… it’s so easy to forget them when you’re there. Sending you lots and lots of hugs… oh and well done on the blue badge. I know it’s ever so hard to get your head round the ‘disabled’ label… but trust me Pauline it does get easier with time. Love Pat xx

4

Hi Pauline

I am surprised your nurse says you are having a relapse, as we dont get them in ppms, although things do alter from day to day, but that is strange for them to use that phrase, presumably they know your ppms.

It is a difficult dx to cope with, but it does get better in time, best to jjust take one day at a time, thats how I deal with it. You need to give yourself time, and when you feel it is right for you, make a judgement about work, I remember how difficult my decision was to finish work, but with hindsight it was the best decision I made.

I do hope things improve for you, but if you need to vent, this is the place to do it, we all underrstand.

Pam x

5

Just sending a hug and kiss from one Pauline to another.

luv Pollyxx

6

Hi Pauline, So sorry you are having such a rotten time, Thinking about you and sending some big hugs. Nina x

7

Thanks for your responses, ms clinic appt is tomorrow, I was surprised she said relapse, I asked about this the last time the consultant said its not uncommon to have an attack, the difference is with ppms is the new symptoms tend to stay,I’ll probably get a different answer tomorrow!

Are any of you on meds for the fatigue? If so what are they,do they work?I have looked at fatigue info on here and read about 2possible drugs for the fatigue but they seem to be inconclusive if they work for m.s.

As for work I now realise my current job is going to be too demanding on all levels, received report from O.Health this morning and basically it said high risk of sickness leave, my standard of work would be affected, it is now a business decision on the way forward.

I have spent most of the day in bed today,got up 3.30pm I get so angry I feel I’m sleeping my life away.

Thanks xxx

8

Pauline don’t get upset, you’ll only sleep for as long as you need to. Fatigue is a huge downfall with ms, I think most sufferers get frustrated with this symptom. The worst part is that this symptom is invisible both to us and others so we feel pathetic giving in to it. Unfortunately if we don’t give in it takes over our entire lives. My Neuro gave me a telling off when I saw him for not resting enough, and after changing my routine I’ve realised he was right.

Don’t beat yourself up, your immune system is doing that well enough without your help. Take care of yourself.

Cath xx

9

Very wise advice Cath. I still have to remind myself not to beat myself up over fatigue… it seems to be a lesson that has to be learned over and over again. Pat xx

10

Pat it sounds wise as it’s what my Neuro keeps telling me but if I’m honest it’s really hard. I’m totally knackered today and totally frustrated with myself as I’ve so much I want to do and I’m not dressed or breakfasted yet. It’s so easy giving advice to others, knowing what’s needed but hard to do. Stupid ms!!!

Cath xx

11

The funny thing is that I’ll fight it and fight it and then I give in… think sod it and get into bed and just totally accept it… and it feels SO much better when I do that. Of course I’m aware that I’m in a good position to do that…live on my own, no children or partner to worry about… I really feel for you younger ones with children at home. Pat xx

12

Saw consultant, asked why is this 2nd attack since Jan if I’m ppms, he said it is unusual, but not unknown maybe other factors virus,stress etc has contributed but wouldn’t be the cause of the spasms & numbness now in my left leg.

I came away with a smile though as he gave me Amantadine for the fatigue & Solifenacin to reduce my toilet visits during the night.

Guess what! I slept from 11pm till 7am feel loads better today, placebo or real I don’t care as long as I continue to feel like I do today.

The fatigue for me is one of the biggest inhibitors and a source of my stress at becoming frustrated.

Pauline xxx

13

Great new Pauline. Lovely getting a proper night’s sleep… actually I think I can handle anything as long as I get a good night’s sleep! And you know placebo is only something in western medicine… in eastern medicine they see placebo as much as a successful treatment as anything else. If it works… it works! So glad you’ve had some relief and a caring neuro. Pat xx

14

Brilliant Pauline, nothing like a good nights sleep, makes it so much easier to cope with all the rest.

Long may it continue.

Pam x

15

Hi Pauline, That’s great news, at least you know one of the new meds is helping. I was given Amantadine last time I saw my neuro, have you felt any improvement in your fatigue? I can’t say that I’ve noticed any change at all. Hope the other one continues to help you at night though. Nina x

16

I agree with that, a good night’s sleep really helps. I’m terrible to live with if I’ve not had a good night. I’ve just had a loo put in my airing cupboard upstairs as I’ve a downstairs bathroom and a curved staircase so the middle steps are triangular and quite perilous so that’s been a huge help for me. It’s very cosy but it works.

I hope your tablets continue to help Pauline, another few good nights and you’ll feel like a new person.

Take care everyone and have a lovely weekend. I’m so excited as I’m meeting a lady I’ve met on another ms support group who’s staying over nearby on her journey from London to Aberdeen. We’ve chatted a lot and her husband surprised her with the suggestion of a stop over around here which is about half way. MS does have a few benefits, you meet lovely people on some of these sites.

Cath xx

17

Pauline sorry you are feeling all over the place HUGS if the help or a shoulder to cry on if that helps, I remember when I had to give up work I didnt want to and wish I could work even now, nI was on one stick when I gave up and have gradually given in iee two sticks then crutches then zimmer now wheelchair give up before you get to bad would be my advice. As someone said benifits wont make you rich, far from it but quality of life is important. As for relapses, I suffer cronic symptemchanges with UTI’s I go rigid unable to staand turn in bed etc legs wont bend etc etc. so maybe your relapse in inverted commas is some reation to a infection or even the stresses you are suffering at the mo. XXX Don

18

Hi Don, Read your latest blog last night…sorry you are struggling at the moment…I think maybe we should be offering you a shoulder or some hugs! Really hope you’re feeling a bit better today . Nina x

19

Thanks Don, I got the rigidity on both previous occassions and it is painful. I also noticed the last few days I’m having tremors in my hands and right leg, O.T also noticed yesterday. The progression is worrying me I’ve lost so much mobility since January,I just want it to stop now and behave according to medical term progression of ppms over years/decades.not months.

Hugs & good health to you

Xx

20

Life is never boring with ms is it? I too get symptom changes and understand your frustration. Some symptoms are variable for me and come and then ease. I hope it’s the same for you. I’ve also got broad shoulders and willing ears if you need them. Cath xxx