angelbum 14/03/15
Last reply 3 years ago
Good Books to read ms

Hi guys and girls thought I would share books that we have read here on ms story’s of others or good fact books . I’m going to list a few I have read and hopefully we can get a list of good ones .

1. Multiple sclerosis my story by Anthony Kelly

2 Akward Bitch by Marlo donato Parmalee

3 My dogs ms and me by Emma Coldron

I will keep posting if I read any other ones that are good .

Perhaps you have read some good ones and please do share with the ms community if you have .
Thanks all happy reading

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angelbum
3 years ago

Most of these I have found on Amazon I have a kindle and find it super for reading you can also magnify the writing if your vision is poor

I would thoroughly recommended buying one .I have the 7 ” one the kindle fire hd but I might buy a bigger one next 🙂


Anonymous
3 years ago

@angelbum : Do you think it is a good thing to know all about MS (see all, hear all, read all, tell all), isn’t there the risk that the whole life turns around the disease, without any break ?


angelbum
3 years ago

Yes I get ya … but why come on here then ? Everyone is looking for answer s support anything looking for someone we can relate with so we don’t feel alone scared with this illness .

Is that what you mean Eric ?


Anonymous
3 years ago

I was sure you would asked me that ! Yes, the site is exactly made for such questions, the one you asked about books … but waitings must not be excessiveness because nothing replaces real life. But yes, your question was in full scope of the site. But… it triggered almost instinctively my question… I can’t justify it, I can’t tell you what i meant, is my intuition.


angelbum
3 years ago

Hi Eric do you mean like to much time looking into stuff instead of just living your life ?

If so I totally agree with you but it’s probably harder when you are not diagnosed !

Then maybe I will start living 🙂


angelbum
3 years ago

Waiting for a diagnoses is the hardest part of all 🙂

I do realise it takes much of life up but I want answers I don’t want to suffer alone with this anymore . I want to be put on meds that may halt the progression


Anonymous
3 years ago

No, it’s not harder. You talk about you when saying “not diagnosted” ? (you didn’t fill your “About”). I guess that if you are not diagnosed, then your handicap is limited, so it’s not harder. You have a sword of Damocles but after being diagnosed, you have another sword of Damocles, the one of relapses and handicap that goes with them. In life, we have tons of sword of Damocles… living with likely MS diagnosis is not more difficult than the rest of dangers of existence.


angelbum
3 years ago

Yes but its the frustration Eric I do understand what you are saying 🙂

Perhaps I will take this under my belt and not try and focus in it so much but as you know it’s difficult as the symptoms never give any rest .

Always pain always stiffness and memory problems

Always relapses that are harder to spring back from each time . I’m still trying to bounce back again from my last one that happened the end if December

The amount if pain and mobility problems I’m still having from it and the constant fatigue .

I’m still not getting out and about the same . If I do go out of my home it’s only fir an hour or so .

If I go out for 3 hours and in for the whole week as I have over done it .

I mean 35 year old women should have the energy and stamina to go out for 3 hours and this isn’t even doing anything particularly strenuous for example taking child to nursery then going to the shops for groceries then a doctor’s appoint and collecting dog from vet .

These are things that are just normal part of living ?


Anonymous
3 years ago

angelbum -> private message …


angelbum
3 years ago

Don’t be put off posting your books up 🙂 he he he


simone2
3 years ago

Hi, My Husband got me a book by Judy Graham MS Naturally when I was first diagnosed, it as help me so much with great advice.


angelbum
3 years ago

FAULTY WIRING
LIVING WITH INVISABLE MS BY SUzanne ROBINS


aussiekylie
3 years ago

Recovering from Multiple Sclerosis by George Jelinek and Karen Law. It is a compilation of lots of people’s experiences and is based on the Overcoming Multiple Sclerosis diet and lifestyle. @angelbum I understand your thirst for information as I feel the same. I think @ericg is just trying to say don’t get totally consumed with searching for information, there needs to be a balance. @stumbler has posted previously the different stages of coming to terms with a diagnosis such as this but I can’t remember it off the top of my head. But it does explain that your searching for information is a normal part of the process.


angelbum
3 years ago

Yes just so you know experiences of others does bring some comfort that your not actually insane .

I know I’m not that’s why I search for the answer to my on going health .

It isn’t the easy thing to deal with and you just need the reassurance at times . Something you can relate too and totally understand and get .

It’s sad life for people who have ms and are unfortunate not to have a diagnoses . This can mess there life’s up thinking they are mad .

Many years ago a lot of patients with ms were said to have a mental illness how fair and unjustified .

By missed lack of diagnoses it can be torture the soul .

Especially what your going through after all it my body I know what symptoms I have had and still getting . It’s absolutely appalling to think many people are put through till this day there is no words that can describe the pain of living with this without a diagnoses .

I find it cruel and I inhumane . I won’t be first one that has been missed or undiagnosed for years but impact that has on one’s life is shocking .

If anything the lack of diagnoses has affected me emotionally no wonder living with a terrible simulating illness since my teens .

I have no words to describe the pain that has put me through and the general lack of medical care .

What’s so difficult to put the dots together to get the final diagnoses


angelbum
3 years ago

Spelling errors will correct later rushing to vet out of door


angelbum
3 years ago

Thank you for all your books you have read . There certainly are some good ones .

Sorry for ranting earlier but this is just so frustrating for me . Can’t seem to find anyone in aberdeen around my age either that has a diagnoses of ms .actually I do no one of my friends that has a diagnoses but is progressive and very obvious to other people .

The problem is when it’s the hidden aspect of ms taking in to account memory pain sensations these all don’t have tests I feel unless it’s absoulty obvious no one gets a diagnoses here . Probably don’t have the expertise up here .I’m unsure if we actually have a ms neurologist in aberdeen there so thin on the ground . It’s hard to get an appoint and the wait is months .


cameron
3 years ago

@angelbum, I know what you mean and I did exactly the same around the time of diagnosis. I had a stash of books kept in a bedroom drawer and (sad to say), I consulted them so regularly I can still quote bits! Fast forward three years, the world is a different place. I take meds, I have regular neuro appointments, work is getting easier. Social life is creeping back. Suddenly, I’m sick of knowing about MS. I have it. Life goes on. One day I go upstairs and throw away all the books. I think it means I’m in control. That’s where you’ll be too. xxx


angelbum
3 years ago

@cameron thanks for your supporting comment . It’s really not a good place to be without a proper diagnoses and medical help . One day I hope the torture will end . I know the illness won’t as I have lived with it since a teenager .

It certainly would be good to get some closure on the my illness and not feel like I have to fight not just the illness but fight for a diagnoses is just cruel .

I understand there are many people who do have other illnesses and even psychosomatic problems but there are many people who genuinely are suffering with there health and without proper diagnoses it’s really quite distressing .

We can’t get access to proper health care we can’t join the proper support groups . We can’t get access to medication which may halt progress a little . I just find it quite appalling that many people with ms suffer without a diagnoses for years and years .

I mean it won’t be the first time or last that a ms patient has had to suffer for many years without a diagnoses .

Not only that but the the emotional aspect it puts a patient through that is trying to tell a doctor about there symptoms and nobody seems to listen . It’s an absolute insult . Even when in my hospital notes it is clearly stated that I had a clinically isolated event at the age of 15 I think this is old terminology for cis.

I have no words to say how appalled I am at the nhs lack of diagnoses or missed diagnoses .

Back in 1996 there clearly wasn’t enough information given to doctors then . It’s only now more information has come to light that children teenagers can get get ms.

The fact that I didn’t even get a mri back then is quite shocking .missed diagnoses !


bonnielassie
3 years ago

Hi @angelbum, hope you’re ok? Sorry you’ve not had response of others living in Aberdeen – I saw your post on the ‘Scottish Ms’ers’ page. Unfortunately, I’m a bit south – living in Stirling at the mo but moving to Edinburgh hopefully later this year. Tbh I don’t think a lot of people look at that page regularly, so it’s possible there are a few locals out there but just haven’t seen it. That is why I put up the idea for a closed Facebook group for us Scottish Ms’ers as I don’t feel that page works particularly well. I was diagnosed with breast cancer in 2010 at the age of 34 and found the Facebook page (which was set up by fellow new breast cancer sufferers at that time), so helpful and supportive. From that we had and still have regular meetings and the group has grown and grown. I think something similar would be good – but I wouldn’t know where to start in setting one up.

I can’t believe you’re still waiting for a diagnosis – where are you now with it? And what are the health professionals saying and doing about it? Feel free to pm me if you want to.

Getting back to the book thing – I am just starting to read the ‘Ms for Dummies’ book as that was the only one they had at my library. Tbh I haven’t read very much at all re Ms as it had been stable for 10 years and only made an unwelcome return in my life two years ago. So now trying to read up on DMD’s as that will be my next step.

Hope you get somewhere with your situation, then I think you will feel slightly more in control. Take care for now.

Emma x


angelbum
3 years ago

Thanks for all reply 🙂

Just started to read a cracker of a book and its making me laugh already only into the first few pages .

Coffee in cereal

By

Lorna j Moorhead x

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