Lockdown, homeworking and CP
Comments
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Hi @Charl73,
I'm pleased that you are finding the online community supportivre and helpful in finding useful information, that's what we are here for. I am also pleased to hear that you are getting outside and going for walks as it helps not only our physical health but also our mental wellbeing. It's difficult when we have to challenge our trail of thought but it sounds as though you're doing great and heading in the right direction. I hope that you are able to get a GP appointment soon and please do keep us up to date with how things go. Keep going, you're doing great
Thank you. 1 -
Hi @Charl73
I can relate to that feeling legs are frozen and don't want to walk. Especially in cold weather or even summer when temperature drops.
Odd times my legs feel shakey or stiff , stressed up maybe at work.
I bought a pair of walking poles this year, just happened half price at £33 at craghoppers. They are better than one walking stick because I can raise my body up when when walking in a park. I don't always need them though.
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Hi! Hope you’re all having a good and safe week! Thought I’d update you on me and to get some further advice from you guys!
I had a telephone appointment with my doctor today, she’s been with me from the day I was diagnosed and is marvellous. She is suggesting I try Baclofen; a small dosage and see if that helps me. She will give me a call in 3 weeks to see how things are. I was suggested this medication when I was first diagnosed but after discussions with my doc and neurologist at the time, I decided to not go on it as my thought was I’ve managed for all these years without any help or medication.
I’m going to give it a go but I wondered if anyone has any thoughts on this, good or bad please?
As always thanks for reading and for all your advice, take care 0 -
Good morning @Charl73
I doing well thanks. Not a fan of the dark at 4:30pm thing but it happens every year!
I don't take Baclofen myself yet but I know dozens of people that do. Baclofen is good for dealing with spasticity and some nerve pain. I know a lot of people that take it just before bedtime, to help reduce spasticity and spasms at night and improve the quality of their sleep.
It is worth taking your GP's advice and trying a low dosage to see if it benefits you. If it doesn't you can stop taking it and explore other options.
Do let us know how it goes.
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Hi @Charl73,
How are you? Firstly, I'm pleased you have managed to have a conversation with you GP and as @Richard_Scope has said it is also worth taking your GP's advice, and you can always explore other options if it doesn't work for you. I can only share with you my own experience and as I'm sure you can appreciate it is unique to the individual. I was prescribed a low dosage of Baclofen a few years ago and, along with other medication, it
helped to ease my spasms and some of the pain I was experiencing. I feel it has helped to managed elements of my CP and hope that it is able to do the same for you. Please do let us know how things progress. Thank you.0 -
Hi @Richard_Scope and @WestHam06, thank you both for your messages Well I went to pick up my prescription today and managed to try the physio tip of counting steps as I walk, it helped a little bit but then I had another freezing wobble and grabbed my partners hand. I’m getting so frustrated with myself which I know isn’t helping. Tomorrow’s another day so I’m sure it’ll be better. Take care! 0
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Hi @Charl73,
Firstly, that's great to hear that you tried the physio's tip of counting steps as you walk, it shows you are willing and determined to overcome the difficulties you are facing, good for you I imagine that it must be frustrating but when we are trying to change our trail of thought about anything, I find it takes time and practice. It sounds as though you are doing all the right things and hopefully the Baclofen will start to help. Please do keep us updated, best wishes. Thank you. 0 -
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Hi, thank you both for your most recent comments. I started to take it on Saturday; just half a tablet once a day for the first couple of weeks. I’m not sure if it’s doing anything but I did go for a walk on Sunday; admittedly it was within a forest/downs so it was on grass/soil but it was a little bit uneven. I managed to have a lovely walk without grabbing my partner to much, plus I managed to walk the length of a car park much better and unaided. So I was feeling quite chuffed with myself.
However, I need to find a better work/life balance with CP as I’ve not been out for a walk this week! I’m having a lot of pressure/difficulties in work; which ironically can make my right side become more rigid. Hope you’re all ok, take care and catch up soon 0 -
Hi @Charll73 Glad to hear. Last January I was working part time 4 days a week for a small charity and was struggling so I asked if I could half my hours to 2 days a week. It was the best thing I did, I have now got a much better work life balance and have more energy to do the things that matter. So good luck.0
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Hi @Charl73,
Firstly, well done you and I am pleased that you were able to enjoy a walk in the forest/downs, it is always great when we can get out and enjoy the fresh air In my personal experience, the Baclofen took a little time before I started to really notice a difference so I hope that you are able to continue to take it and that you are able to notice a difference soon In terms of getting a work-life balance, it is so important, not only for your health but also for your wellbeing in my opinion. How would you feel about trying to open up a conversation with your employer about this? I often find, in my own experience, when I am under pressure or feeling a little stressed my body is a little more rigid and I experience more spasms than usual. I hope that you are able to find a positive way forward in terms of your work/life balance and please do continue to keep us updated with regards to the Baclofen. Thank you.
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Hi @WestHam06 and @Georgiacdon, thank you for your comments and for not forgetting about me! I've not had a good 3 weeks, work hadn't got any better tbh it got worse, in that they are not recognising my capabilities. I kept going for a week but then it just was making feel so anxious and I really wasn't in a good place. I spoke to my GP and was signed off for 2 weeks with anxiety. I went back to work last week and explained that I can do my role extremely well but it was the way they are dealing with me that isn't helping. They expect me to be faster at my role. Again, I'm trying to explain to them how I'm feeling but it's a battle. Also my GP has suggested that I come off the Baclofen as it can cause anxiety and I'm now on anti-depressants. I've never had such problems in my working life but I'm determined to fight for what I feel is right.
Thank you again for all your support and I would like to wish you all a very Merry and safe Christmas :-)
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Hi @Charl73,
I'm sorry to hear that you have had a difficult few weeks, I imagine it can be quite stressful dealing with all these things at once. I also respect your determination to fight for what you believe is right, good for you I also imagine it can be so demoralising trying to express your point of view and feel you are not getting your voice heard. It is so important, in my opinion, that employers recognise each individual's capabilities as well as ensuring that they are having their needs meet to enable them to share these capabilities with the company. I am really sorry that you feel your employers are not doing this. I really hope things start to improve for you in the coming days and week's ahead. You know that the community is always here for you. Merry Christmas Thank you. 0 -
Hi @Charl73
I'm really sorry to read about your recent difficulties. Could I ask what your job is? It might also be worth contacting Access to Work as they can provide equipment and things to make your job a little easier.0 -
Hi @Richard_Scope and @WestHam06, thank you for your messages. I work for as a Customer Specialist for an airline. I’ll have a look at Access to Work; thank you. Although I’ve got the equipment I think I need, the main issue is that they now are saying I’m not producing enough work (hitting targets), however they can’t fault the work I’m doing. Occupational Health and my GP have agreed that I won’t be as fast as others and so Occupational Health did reduce these slightly but are still not achievable. I’ve got another Occupational Health appointment this week, so we’ll see how that goes. Hope you are both well and safe. Happy New Year and thank you again 0
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Have you spoken to Occupational Health about Reasonable Adjustment? It doesn't always have to be things to do with the physical working environment. It can apply to tasks etc. There is information about it here in Finding Work that Suits your Life and Condition
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