Hello - My first time here

[floridash]

Hello. My name is Jess. This is my first time really speaking about PVF with anybody other than my family and teachers. I’m 15 and currently in high school and so, as you can imagine, this isn’t an easy time for me. I’ve been diagnosed with PVF for about a year and a half now but it doesn’t seem to be improving. So now, faced with imminent exams and abnormal amounts of stress, I find I’m struggling to cope. It’s frustrating because many of my teachers have never had a student with PVF and don’t really seem to understand what it entails despite explanations from me and my doctor. They lecture me about my absences from school even though they have been provided with doctors notes. It is making school even more difficult to cope with. Is anybody else in a similar situation? Is there any way I can help them understand? Also, any tips on coping with the stress of school work and the PVF exhaustion would be greatly appreciated. Thank you.

[rm1]

i am surprised about your teachers giving you grief they should know about ME/PVF/CFS as its quite common in your age group. You need to talk to ssomeone on the staff who you trust and if necessary get your doctor involved to inform the school about how sick you are, the rest of your teachers should then be informed by their managers and told to give you as much leeway as you need.
I am a senior school teacher myself and my school has had several pupils with it in recent years, they have all had many months off and have all ended up doing really well in their exams so I wouldn't stress about that, you can always retake if needed anyway. Also quiet stress free revision at home can be very effective. My advice is concentrate on resting and getting better, the good news is the recovery rates amongst your age group are very good.

[floridash]

Rm1 – Thank you for replying to me. My mom and I have taken notes from my doctor to my year group managers and explained to them the effects of PVF but that yielded next to no results. Only a few of my teachers were informed. After we saw how ineffective it was, we spoke to the deputy head teacher who was also my history teacher at the time. He was very sympathetic and offered me a lot of support in his class and a few more teachers were informed. This was last year and now everybody seems to have forgotten and are troubling me again. The report sent home to my parents repeatedly mentioned my absences, we have received letters from the school because of them and it’s has gotten to the point where I feel guilty for taking time off, despite needing to. Homework is probably the biggest challenge as most of my freetime is spent working on it. I’m glad to hear that my chances of getting over this are good; the idea of having to continue like this is unbearable. Thank you.

[rm1]

My advice is go back to the deputy head with your parents and tell him that its still a problem and being got at by teachers is making it worse, stress is a big issue with this illness. Your teachers are busy people and have probably forgotten about the problems you have and assumed wrongly that you are over it by now. (people struggle to understand the lengthy duration of this illness) Other than that you just have to focus on your recovery and ignore other peoples unhelpful behaviour even if it comes from your teachers. Comments on reports aren't that important in the long term your health is.
If it makes you feel any better i am struggling with this disease in a school setting too and the other teachers can be insensitive to me too and I am a 40 year old member of staff, I just ignore them and focus on doing whats right for me.

[floridash]

Yes, that does seem to be the best idea. I’ll see if I can arrange another meeting with him and maybe there will be some improvement. I can’t blame them for not understanding. After all, it isn’t their fault they haven’t had experience with PVF before and I wouldn’t wish this upon my worst enemy. It does make things more complicated, though, and I think that unless you have something visibly wrong with you (like an arm in a cast or a broken foot) people tend to forget that there is a problem. Not just teachers but everybody. Even my close friends and family forget that I can’t pull as much weight as I used to, sometimes. I manage okay for the most part, I can cope with everyday life. My grades have dropped a bit but only from A*’s to A’s so I can’t really complain too much. I know that there are people who are much worse off than I am. Focusing on my health is the most important thing. Thank you for your response, it’s reassuring to know that I’m not the only person dealing with this.

[isis25]

Hi Floridash, welcome to the forum.

I guess from you saying 'high school' and 'Mom' that you're from across the pond somewhere in the states or canada? If so then try this site <a href="http://www.cfids.org/youth.asp" target="_blank" rel="nofollow">http://www.cfids.org/youth.asp</a>
They should be able to give you good advice and also advise your school on how they can help you. If i'm wrong and you're in the UK then AYME.org.uk will be able to help!

Ang
x


--
I won't let ME/CFS and Fibromyalgia rule my life, I'll just adjust it accordingly!

[floridash]

Hello! Thank you for welcoming me. I'm from the UK (I'll put my American-style typing down to pen-pals and pop culture) so I'll be sure to have a look at the second website. Thank you very much from providing those links. It always feels so isolated, like nobody else understands, so being able to speak to people who have been though it themselves is very helpful for me. Thank you.

[Sandra]

Hi Floridash,

I can recommend the book "Beating Chronic Fatigue" by Dr Kristina Downing-Orr, available from Amazon. Chapter 7 in this book was my life saver and started my recovery (not fully there yet, but am on my way), lots to do with nutritional supplements and nutrition in general. The book had been discussed on this forum before. Also Acupuncture has really helped as well, you could try and see if this works for you.
One problem with CFS is,of course, that one is usually too tired to fight for one's rights, but I am sure your mum will continue to speak to the headteacher and individual teachers. You could also give them some information leaflets, so they gain a better understanding of the illness.
All the best, Sandra

[floridash]

Thank you again. I'll see if I can get a hold of the book you suggested. Acupuncture was something that my doctor suggested to me but I have a very severe needle phobia and I feel like it would only do more harm. The amount of stress and fear I feel just going for routine flu jabs is unbelievable and I'm positive putting myself through that will only make it worse.
I don't plan on giving up just yet and, hopefully, with time they will gain some understanding. I'll try giving them leaflets or website links. Thank you, Sandra.

[Init1972]

Floridash - this is the website you need and they will give you ALL the info on what to give your school and help with exams etc <span style="color:#0000FF">www.ayme.org.uk </span>

It is FREE to anyone under the age of 26 so please join them and I believe they also have a forum with others who are around your age with the same things going on.

Try to print BOTH of these articles to take with you to the GP & also have copies for your school - your parents need to be on board too and take you straight to the Head - no-one else go straight to the top for help:

<a href="http://www.meassociation.org.uk/?p=9657" target="_blank" rel="nofollow">http://www.meassociation.org.uk/?p=9657</a> - ‘<b>Study warns of higher ME rates among pupils</b>’, The Guardian, 13 December 2011

<a href="http://www.meassociation.org.uk/?p=9653" target="_blank" rel="nofollow">http://www.meassociation.org.uk/?p=9653</a> - <b>Chronic fatigue syndrome ‘affects one in 100 pupils</b>’, BBC News, 13 December 2011

I hope things improve for you soon and please do stay on this forum and let us know how you are getting along

Les <img src="images/smilies/biggrin.gif" border="0" alt="Big Grin" />