It’s been a while since I have posted an entry on here. It’s been a busy few weeks. I’ve celebrated turning 33, adjusted to having a flare up of symptoms in a new area, spent time with loved ones and been given plenty of Easter Eggs.
My MS Symptoms aren’t really easing but I’m learning to deal with it and carry on as normal. My feet always have the pins and needles, heavy tingling and burning sensation. I have decided to come off my meds – it was only a very low dosage but I just don’t want my body to get addicted to them. If I’m mentally strong then I can deal with the sensations and pain.
Despite the 8 hour journey down due to an accident on the M1 we all had a lovely time seeing family who we haven’t seen for ages over the Easter Weekend. I saw my beautiful little niece who recently turned 1, she is so gorgeous, as well as my handsome nephew and cousins. We ate great food over the Weekend, truly got spoilt by both Mum’s! My Sister In-law made the tastiest Chocolate Easter Cake.
I really should put the recipes up on here shouldn’t I!
I had a little bit of wine, I thought since everyone was having a drink, I might as well too. However after having a drink I have found that my MS Symptoms flare up really badly. The tingling gets heavier and I have the worst head spasms you could imagine. Knowing this, if I do have an alcoholic drink then I know the consequences that I have to deal with afterwards.
I have a funny story to tell you. Over the weekend whilst I was at my In-laws, myself, my Sister In-law and Mother In-law were in the bedroom going through a whole load of saris as we have a wedding coming up in May. We left my son Nico with my Father In-law in the Living Room. My Father In-law was busy chatting on the phone, whilst this was happening, Nico managed to get hold of an Easter egg, sat very quietly behind the sofa that my Father In-law was sitting on and ate ¾ of the egg!!! Nico was so hyper after that my goodness!!! The cheeky monkey! He won’t be eating chocolate again for a long time.
I have recently found that keeping occupied, seeing friends and family, having plans all really helps with taking my mind of the uncertainty of MS. Don’t get me wrong, it will always be at the back of my mind and I will still suffer from fatigue and get tired very quickly but it is good to be busy. For the next month there is something happening every weekend. I just need to go with the flow and take it easy when I need to.
I still find that many people, especially family don’t like to bring the term ‘MS’ up with me. I don’t know whether they feel awkward, or whether I will get upset or just think it’s all a taboo subject. If anyone is reading this – then please ask away, if you are curious to know more – I really don’t mind :-) Talking about it really does help.
This coming weekend I am putting together my work space area at home. I will update you next week and photos to follow. Have a good week everyone and keep smiling.
Wishing all you lovely mummies out there a very Happy Mother’s Day. I hope you all had a wonderful day and got v spoilt.
I was really ill over the past couple of days, thankfully starting to feel a bit better now. Think it was a flu/sickness bug however you know what it’s like with MS; all the symptoms flare up really badly with the slightest cold. I woke up to a big hug from my son and then i got shown a lovely home video starring my son!! Followed by a lovely fruity medley, cards, flowers and huge hugs from my Nico. X
For those of you who do follow my blog – apologies as it’s been almost a month since my last entry. It’s been a busy few weeks. I’ve attended a couple of MS Sessions with other newly diagnosed patients, spent some quality time with family, been busy working 9 till 5:30 and I’ve also had a flare up of symptoms in new areas.
The last MS Group session that I attended – I felt really emotional as there were others there who felt upset about the uncertainty of their MS and when their next relapse would happen. Prior to that I felt like I had reached a good place and felt very positive; but after hearing other people’s thoughts and worries – I began to worry a little.
I know by worrying – it’s not going to help. I have to keep telling myself that I need to take a day at a time and whatever happens - I and my family will deal with it.
I have started to take 10mg of Nortriptyline at night and it’s really helping with the Neuropathic pain. I also get a good night’s sleep so I am fresh for the next day. After a week of taking my meds I began to get a tingling, burning sensation in my left foot and calf. I thought that it could be a possible side effect from the meds. A few days later I started experiencing the same in my right foot and calf. After speaking with my nurse she said it sounded more like a flare up of symptoms. Whatever you want to call it – a flare up, a relapse, an exacerbation, an attack – it means the same thing.
It just feels a little scary that it’s happened in a new area of my body. Don’t get me wrong – I am still fully mobile, it’s just the sensations that I am getting – burning, tingling, pins and needles, heaviness – just how my arm, hand, part of my spine and my face feel. I can get use to these sensations in a new area – I suppose I have no choice, I just hope it doesn’t get any worse.
I’d love to hear from others who have been in a similar situation.
My emotions have been like a rollercoaster but I’m lifting myself back up again now :-)
This coming Sunday will be my 2nd Mother’s Day. Now that Nico is a little older it will be interesting to see what he and Anish have planned for me, so far I know I’ll get a lie in and breakfast in bed!
We spent last weekend with my Mother In-law, I’ll see my Mum at some point this weekend. I also turn another year older next week :-(
I’ll let you know next week how my Mother’s Day and Birthday turned out. Hopefully my symptoms would have settled by next week, let’s see……..
I’ve always known that I’m not alone in my situation but after attending a couple of MS Awareness groups over the past 2 weeks, it is so reassuring to have met people in such similar situations that I face every day. Just being able to talk about symptoms such as memory loss, loss of balance, head spasms, tingling sensations – others are also going through it, not just me.
I know I have my family and friends to confide in, but it’s different. They can only try and understand to a certain extent as they aren’t experiencing what I am.
I am slowly starting to open up to my MS group; it is a difficult and sensitive situation to be in as everybody deals with their diagnosis in different ways. So far I’ve found other people’s stories quite emotional to listen to but at the same time I admire them so much.
One lady has had MS for 22 years, yet she is so bubbly and positive. She has had relapses where she has had to use a wheelchair, walking stick, she lost her vision for a while but she has bounced back. She is now the Chair of the MS Society in Leeds.
Since being diagnosed with MS, at the back of my mind I have always pictured myself to end up in a wheelchair – which terrifies me. But over the past couple of weeks I’m learning that everyone’s MS is unique. It doesn’t necessarily mean I will end up in a wheelchair or with a walking stick – if I do, then I do! I along with my family will deal with it. I just have to take a day at a time and most of all keep positive.
One thing which several different people have said to me over the past few weeks is how strong, brave and resilient I am. I am not sure if that’s true or not after meeting others with MS. I’ve finally stopped feeling sorry for myself and have realised that I just need to enjoy the here and now – not to worry what will happen in years to come. I still cry when I’m in pain and having a low day, I get it out of my system and carry on. I think this MS Awareness group has really opened my eyes and changed my way of thinking.
A Weekend of Celebrations……
So it was great to see so many family members and celebrate my cousin turning 18 and my nephew turning 1 over the weekend. A get together was well overdue as I haven’t seen most of the family since December due to having a bad start to the year – health wise. I saw my cousin who went to study at Birmingham, quite funny as she thought she was surprising us all by coming – we all secretly knew she was coming and didn’t manage to act surprised at all! We missed my cousin in Cardiff as everyone else was there. I look forward to seeing her in April. The Birthday girl looked as fabulous as always. I met my new sister in-law and she’s really lovely.
Nico thoroughly enjoyed himself on both days, as long as there is food – my son is a happy chap!
Also saw lots of nieces/nephews which was so nice. They are all growing up so fast.
For the people who have MS: I am sticking to my new eating plan; it is really difficult, but definitely worth it. I know it will be worth it as one evening I decided to be a little naughty and treat myself to some chocolates. I really enjoyed them, then after about 30 minutes my symptoms really started to flare up. The left side of face started to spasm, my left hand went extremely numb and heavy and my back went really numb – it was horrible. I also had terrible head spasms in the middle of the night; I couldn’t move my head and lay awake with the pain for about three hours.
I am hoping if I am strict and I stick to my eating plan – then the symptoms will calm down. I just wish the constant pain would stop, just for a few minutes.
Having a busy weekend didn’t really help as I felt absolutely drained by Sunday evening. It’s annoying as I don’t want to stop having a social life, but it has to be in small doses as the pain is really excruciating. I need to make sure I have 1 day planned and the next day to rest.
Some people get really surprised by how tired and how much pain I am in after only a little while. Because my MS is invisible to everyone, it’s really hard to get the message across.
This evening I had my 1st session at the MS Awareness Programme. I met George Pepper – one of the founders of www.shift.ms – it was really interesting listening to him talk about his experiences and living with MS. I could really relate to a lot of things he talked about. I suppose it’s a good thing to meet other people who also have MS. The evening was emotional for me but I expected that.
For the People who are Mummies: Don’t the kids grow out of their clothes really quickly?!
I was sorting through Nico’s clothes and there are so many clothes that he’s already grown out of – some of which he hasn’t even worn! They are all boxed away – just in case we have another boy in the future. :-)
I have a feeling it could be that time to buy a potty for Nico. Just to get him use to sitting on it as he understands when you ask him if he’s pooped! He will grab his nappy, give you a cheeky smile and either nod or shake his head. I’m not too excited to potty train but I need to start sometime. My mum told me she started potty training me when I was 1 so I don’t believe that there is an exact age to start.
I mentioned before about Nico being happy if there is food around. He really loves tasty food. When I say tasty, I mean spicy. Basically whatever Anish and I eat, he does too, It seems he has a passion for food, Watching intently as we cook, and even more so to eat it all up!!
For the People who love cooking: I still need to add some more recipes to my Recipes Page. Anish made me such a delicious dinner last week (well 3 in total). He named this particular dish ‘Chicken a la fuś with love’. Yes I know, very lovely dovey – but that’s Anish.
It was so yummy, he made it up as he went along but that has to be one of my favourite meals. He served it with roasted carrots, garlic, leeks, tomatoes and onions. Please have a look on my Recipe Page and try making it.
My fridge now is filled with lots of vegetables – aubergine, courgette, cauliflower green beans, peppers, fresh herbs, mushrooms, leeks, carrots, tomatoes, fish, chicken – healthy eating all the way.
Until next time x
My package of happiness - Nico
It’s been a while since I posted my last entry. I had a busy week last week.
I’ve learnt one thing – some friends come and go in life. I’ve had the unfortunate experience of realising that sometimes friendships just drift apart.
I also met up with an old friend who I haven’t seen properly for over 16 years. It was really nice getting back in touch again; the beauty of it was that there was no awkwardness – just like old times and we had so much to catch up on.
I’m finding that I seem to be reconnecting with a lot of friends I had years and years ago which is really nice.
The evening before Valentine’s Day I came home to a lovely bouquet of my favourite flowers – Cream Roses. Anish never disappoints me when it comes to flowers – he knows me too well!
I am so happy at the moment. Anish and I went to pick up Nico from his parents’ over the weekend. It feels so good to have him back home. My energy levels feel great and Nico is blocking away my pain and keeping me busy. It’s nice to be back into our routine again too. Don’t get me wrong – the pain is still there, but just seeing my cheeky monkey smile at me – ah it’s so nice!
I’ve been away from Nico for almost 3 weeks. It’s amazing how much he has changed and how much he has learnt. I was so worried that he’d forget me. Thankfully to my advantage – he didn’t! :-) (I suppose they don’t really do they?)
I am so grateful to both sets of parents for looking after him. I don’t know what we’d do without them really.
My cousin turns 18 and my nephew turns 1, so this weekend we have lots of celebrating to do. I was about to say ‘and lots of eating cake’ – but not for me. Anish and I have been doing a lot of reading about foods related to MS Symptoms. I am now on a new eating plan which will hopefully calm my symptoms down. The eating plan consists of NOT eating the following: red meat, white potatoes, white rice, white bread, fizzy drinks, sweets and dairy.
It’s going to be hard but hopefully worth it! Let’s see!!
My MS Awareness Programme starts next week which I’m looking forward to. It will be good to meet others who have been recently diagnosed with MS and be able to relate to one another.
I’ll let you know how the first session goes next week.
I firstly want to say a big thank you. I was having a very low week last week. After I wrote my last entry I had so many friends and family send me some lovely, encouraging messages.I even received messages from people who follow my Blog on Tumblr and Twitter – people who I don’t even know.
It’s been a strange week. I went to the hospital during the middle of the week and saw my Neurologist. I had tests done, an ECG, Bloods etc. She basically told me that I was rundown and that I needed to take it easy and rest. So that’s exactly what I did. I rested for 3 whole days, I got lots of sleep. I then went to work on Friday as I felt like I had got enough rest. It was nice seeing everyone and going back to some normality. I went out for date night with Anish, we had a lovely meal. By the end of the day I was shattered and felt like I was coming down with something. My plans for the weekend were to go out with my husband and make the most of our time alone whilst Nico is at his grandparents. Unfortunately I just didn’t have the energy! I did manage to sort out my shoes (I posted a couple of photos earlier.) Other than that, I’ve decided to relax in my PJ’s, try and recover from whatever cold I have. My aim is to be re-energised by next weekend when Nico comes home. The weather is a bit wild outside, so an even better excuse staying in!!
So I received a letter in the post this morning. It was an invitation to attend a 5 week Awareness Programme for People newly diagnosed with MS. When I read the letter, it felt strange. Even though I know I have MS, reading it again in black and white – it just makes you feel weird as if it’s all new again. I can’t explain it properly. Anyway, the sessions sound really promising. It will be a good opportunity for me to meet other people in Leeds with MS in a similar situation to myself. It will also give me a chance to air my feelings to non-family members. The sessions include: All about MS, Diet in MS, Fatigue in MS, Exercise and Posture and Coping with the change. I think it will be really beneficial for me.
Speaking of exercise, my lovely cousin Leana has asked me if I want to go and do Yoga with her every week. She’s noticed that I’ve been having a bad time and sent some lovely messages and has encouraged me to go and do Yoga. Not only us two – but the whole clan! My Aunties, Mum, cousins, who knows – my granny might even tag along. I’ll let you know how the first session goes.
Also my Diet and Eating Plan has to change. I’ll be spending tomorrow reading up on what foods are best to try and control my MS Symptoms. Anish my lovely husband has got a whole load of reading material for me to go through and agrees that my eating plan has to change. This will include cutting out a whole load of my favourite things, but it will be worth it. Once I’ve researched it, I’ll tell you my findings.
I’ve had a really bad start to 2014, if I don’t help myself by being positive, changing my diet, exercising and really trying alternative remedies then my MS is just going to get worse. As Anish tells me, it’s up to me to do something about it.