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Support, help, advice & information for Multiple Sclerosis. Ask questions & share experiences with people affected by MS.





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Feeling rather low

Posted by Adele , 09 January 2014 · 1,003 views

Hey Everyone,

I'm new to the forum and currently off work having literally just had another relapse which began on boxing day! I had my first attack in 2003 and was misdiagnosed at that point in life when I was just 21. I later went on to experience a "relapse" in 2007 when it was a short time later I was given the dreaded news...I had MS! Obviously earth shattering but I came to terms with it eventually as I imagine everyone has to! More recently 2011 onwards, I've gone on to have a further 3/4 attacks which I more or less fully recovered from having an intense course of steroids.

I made the decision to go on Disease Modifying Drugs in September 2013 and started on Avonex but me being me, had to experience one of the 'uncommon side affects' didn't I and this drug made my hair fall out! I thought to myself I'm not putting myself through the trauma of loosing my hair quite dramatically taking these drugs whilst feeling really well and decided to come off Avonex after just 6 weeks!

So that's when the second relapse happens in the same year and I'm still struggling with a hand/arm that's completely useless! Can't even as much put a bobble in my daughter's hair! I'm signed off work, can't do anything and all's I want to do is live my life! I don't think I'll ever come to terms with this horrible lifewrecking disease and I just keep thinking "what if I don't make a recovery this time and my arm and hand is stuck in this state forever". I've never experienced fatigue like this neither.

Made the new desicion to start on Copaxone which is an every day injection, again another thing I'm going to have to come to terms with having to prod myself with a needle every day!

Sorry for the rant but I feel I have nobody to talk to that understands!



Hi Adele and welcome!
Sorry to hear you are feeling so low, but I can completely understand why. It's so hard when you are in a relapse to see the end. I remember struggling in my first big one, I was unable to change my little boys nappies and I felt so useless. But if you have recovered well from other relapses, then hopefully you will with this one too. Have you a good support network of family and friends? I found the hardest thing was to stop trying to be superwoman and asking for the help I really needed!

What a shame that avonex didn't work out well for you, didn't know it could make your hair fall out, must have been awful for you. Hopefully the copaxone will work better and you start  to get some control back.
This forum is a great place to come too for support, loads of lovely people who can relate to how I'm feeling. Don't know if any of that helps! But I wish you a speedy recovery. :-)

Laura
Hi  again Adele

I hope the copaxone works out for you , try your best to put  what
happened when taking the Avonex out of your head , its in the past and fingers crossed its not likely to happen again

I don't think anybody actually comes to terms with having this , but
you can learn to live with it , my  moods are up and down like a yoyo

one day feeling great then wake up the next morning feeling aghhhhh lol

hope you feeling a lot better soon

Mal
Hi Adele and welcome from me too.

I am so sorry to hear about you bad experience with Avonex - like Sam I was unaware of that side effect. I hope your hair grew back once you came off it. Hope you get on better with Copaxone. I was on Rebif for two years and Copaxone for about four months - you get used to injecting quite quickly - it just becomes part of your routine - like brushing your teeth. I have recently been diagnosed with SPMS so am no longer taking any dmd's.

It is a struggle to come to terms with this horrible disease. I think the most important thing is to listen to your body and don't push yourself. Like Sam says it is good to have a good network of family and friends who can help and will hopefully understand. The good news is everyone on this forum understands and can offer help, advice and support.

I hope you make a speedy and full recovery from this relapse.

Gill x
Thanks so much guys, alot of words of wisdom! I look forward to building up a close network with everybody and getting to know people who are going through the same because no matter how much you try to describe what your going through with family and friends, these people will never understand, even the professionals. My husband is my rock and he does so much for me and the kids to relieve some of the pressure whilst I'm laid up but even he needs a break, can't imagine what must go on in his head! I hate talking about my condition to my friends because I hate sympathy and the convo soon fizzles out because I just don't think most people can deal with it nor know what to say!

My hair has now grown back and Avonex is certainly on the backburner! I hope to have a better relationship with Copaxone! I can't help but think though of little things like "what will I do for injections when I take the kids camping in the summer". Just stupid irrelevant things really!

Gill, thank you and I am so sorry to hear of your recent diagnosis of SPMS, do the DMD's not work with this form of the disease? I am Sorry for the niaivity. I hope you are well at the minute though hun x

Thanks Mal, the my moods are the same keep crying, always the "why me" scenario! Hate it! But suppose positivity gets you everywhere and that is what I keep telling myself x

Hey Laura, thank u so much, how many children do you have? I have 2. I can't imagine what you must have gone through when you said you couldn't change your little boys nappy :( My youngest is 5 and has beautiful long hair, can't even tie it up at the min coz my brain won't tell my hand how much pressure to apply when gripping things because of these bloody lesions! The superwoman thing makes me giggle because your so right! As a parent you have to be superwoman don't you and for you to adapt differently is the hardest thing ever! I hope you are well hun x
Your rant is understandable and is one of the reasons for a forum of this nature - we understand.

MS may be your condition, but it does effect the entire family. So, it's best to come here to let off steam, rather than create an atmosphere at home.

But do try and avoid stress and worry (but I'm a young Mum with MS, I hear you say). I know, it's difficult, but a diagnosis of MS gives us a chance to re-evaluate all aspects of life and we can focus on what's important and what's really immaterial.

So, if you can avoid worry and stress, you'll hopefully find that MS will be kinder to you. These negative emotions seem to feed it.

Good luck with the DMDs. With these treatments, it can be a case of "horses for courses". You've tried the Betaferon option and Copaxone is the next option. If this is problematic, then you may be considered for Gilenya, an oral treatment.

:moonieman:
Hi again Adele, I have two boys (3&5). It's so hard to adapt to the ms stuff as a parent, because anything less than normal can feel like failure.I just try and make the best of the good times and accept that in the bad times I'm going to need extra help. The boys are quite understanding for little ones, there happy to snuggle up and watch a film when I can't face anything energetic! Glad to hear you have your hubby support, but you are right in what you say, if you don't have it you can't really get it! Thats why I come and ramble on here, it helps to know you are not on your own!!
Have a good weekend :-)
Laura x
Lala, I hear you! I'm mum to two lads, one is 17 the other 20 months. (I must be mad)  I'm in a real slump at the moment. I don't have family, well I do but they don't live near me and we don't get on. My partner is great but he doesn't understand and I'm a mess at the moment.

This place is great to vent. Everyone has been there and totally understands.

xxx
Hi again Adele,

Sorry I'm a bit late in answering your question regarding dmd's and SPMS. The dmd's are not supposed to work for SPMS as something different is happening to cause the symptoms now. However my consultant was happy to leave me on Copaxonee as you can sometimes still sometimes suffer relapses even when you are SP.  I made the decision to stop it as I am hoping to get on a trial for drugs that are hoped to slow the progression of SPMS and one of the criteria is that you can't be taking dmd's.

I hope you are feeling a bit better these days. Have you made a decision regarding the Copaxone? You shouldn't have a problem going camping and still injecting as you can take up to two weeks supply with you and it doesn't have to be kept in a fridge. I regularly looked out my weeks supply on a Sunday night and kept it upstairs in my bedroom where I was going to inject.

Sending hugs.

Gill x

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