HOW DO YOU FEEL EACH DAY????

I am pretty much out of options as far as painkillers go but I started setting my alarm to take the first set a few hours before I want to get up for the day so that when I wake up in pain, I can take the second set of painkillers. This means I don't spend the first 4-8 hours of the day just waiting to feel well enough to do anything and also it was quite demotivating to wake up and take a set of painkillers knowing that they weren't actually going to help until I can take more 4 hours later. I did not change the medication or the dose, I just simply changed the times I take them and have found them to be of far more benefit to me now.

The balance is different for each person so it is up to the patient to explore what works best for them. Everything you take should be under the advice of a doctor, but you should be discussing ways of tailoring treatment options to your own needs. Instead of negetive thoughts like "These tablets don't do anything for me" or "The side effects out weigh the benefits of these tablets" try asking "Am I doing eveything I can to give this medication it's best chance of working?" or "Are there any ways I can minimize the side effects".

I would honestly say that it is very difficult to find the right balance for you, especially as something that works well one day, may not work well the next day so you will have to continually observe and modify how you do things. I know from speaking to you previously that you have a strong pro-active attitude and are aware of the benefits of keeping a diary so I think you have no problem taking the lead with your own recovery.

Aside from the medication which is there to manage the day to day symptoms of your recovery, it is important to keep some perspective of the bigger picture for you long term. Decompression surgery is primarily done to prevent further deterioration of a patient rather than to improve their health or even quality of life. Many people are lucky to experience an almost instant relief of certain symptoms following surgery whilst others like myself feel considerably worse in comparison to before. This does not mean that I should not have got the surgery, if I had not I almost certainly would have become paralyzed in all four limbs due the the syrinx.

Doctors look at the bigger picture which can be very frustrating. Many of us know how it feels to have surgeons show you a scan and tell you how much better you are when you are telling them how much worse you feel. Patients live at the opposite end of the scale, the more you suffer the more short term your thinking becomes so when you are told "Why don't we try this pain treatment that may help you...see you in a few months" all you can think is "I don't know if I can do the rest of the day like this, let alone months!"

Try and see your recovery from both sides. Keep in mind the purpose of the surgery, especially in terms of the years ahead but also help the doctors to understand the day to day impact of things for you so that things are managable for you.

If you feel well enough, please update us after your surgery as to what you are struggling with most. Again everyone is different but like me you may find that you are ok with some things that are expected to cause difficulty after surgery, but bothered more by symptoms that you weren't quite as ready for.

Between the group on this site there is plenty of experience to draw from and I know that any tips or advice that people found useful themselves after surgery really makes you wish you could pass the info on to the next person in that situation in case you can save them the battle of figuring it out for themselves. Best of luck, I hope you are in the right frame of mind to be excited about the surgery. I know this sounds weird but knowing the the recovery is long and hard can actually be used as possitive motivation. The more people warned me of the things to come, the more I thought "OK I accept that now, so let's do the surgery as soon as possible so I can get on with recovering!". As you know exhaustion can be very demotivating, which is why I make use of this site and the people like you I have spoken to so that I can fall back on the possitive attitude of others when my own feels too weak. I hope it picks you up the way talking to you and others has done for me.