Month: September 2014

Birthday’s

/ RachelMorrisMcGeethemyastheniakid / 4 Comments

When you suffer from chronic ill-health your birthday can be a terribly hard thing to have to deal with. It’s not just the fact that you are another year older and lets face it there is not a lot you can do about that, a birthday is also another reminder of how many years you have been sick for.

After Birthdays I find the New Year  difficult for the same reason. It’s just another reminder that life as you previously knew it has stopped. You can’t keep wishing every New Years Eve that you will get better as each passing year tends to throw even more health challenges you way. It’s another marker of the time you have spent in the prison of chronic illness.

Getting older can be a tough enough thing to deal with in this youth obsessed culture of ours without adding in all that chronic ill-health brings to the table.I feel that I lost the years from 2007 until 2011 when I was finally diagnosed, as they were consumed by my quest for answers regarding my health. I have lived in those years, what can only be described as a lifetimes worth of medical nightmares at the hands of those who were supposed to have my health at the heart of everything they did. They are years that I will never get back.

 

I am angry that I don’t have many happy memories from that time. I did not only have to contend with poor treatment by medical professionals, I also had to endure a hostile working environment and being medically retired in my 30’s when most people’s careers are really starting to take off. Birthdays in that time period are not memorable and I know I faced a deep sense of frustration when that time of year came around.

 

 I will be 41 in a few weeks time and I am already unhappy about it. I enjoyed turning 40, finding increased self-confidence and finding my voice again through this blog. I don’t want turning 41 to change any of that. I have told my friends and family that I am skipping all the birthdays between 40 and 50, I shall be 40 each year until I hit the big 5-0. 

Mine and my husbands birthdays are on consecutive days. Our joint birthday celebrations are incredibly different now to what they once were. Before I became sick birthdays were all about going out with friends, seeing family and generally consuming a lot of alcohol. Since 2007 they have been subdued affairs. Some of my birthdays have been spent completely alone because my husband was unable to get the time off work. With my friends also working and my family living over an hours drive away it meant my birthday passed in an uneventful and lonely way. 

Those birthdays spent entirely alone were some of the most depressing days I have ever faced in the 7 years since I became ill. I had cards and presents from people but to spend your birthday alone is tough. Being chronically sick means you already feel disconnected from the world around you, seeing friends posts on Facebook about the wonderful time they were having on their birthdays only magnified the disconnect. It was no ones fault that those birthdays were spent alone. The world doesn’t stop turning just because its your birthday and other people have to work, have families of their own etc.

We grow up expecting the day of your birthday to be some how different and special. Most people spend their birthdays with their loved ones or celebrate with friends. When illness prevents that from happening it magnifies the monotony of dealing with a chronic health condition. If you can’t escape it for just one day, it makes the passing of another year so very difficult to deal with.

 

Those who don’t struggle with illness would probably never even think about how emotionally charged birthdays can be. They can provide a great deal of forced reflection especially if the day is spent alone. You can become wrapped up in what life was once like and feel a great deal of negativity towards the future. You can find yourself wondering if you will ever improve or if this is the way every birthday will be spent for the rest of time. With this in mind I was determined last years celebrations had to be the one that ended all the negativity I had been feeling about my birthdays.

 

Last year’s birthday celebrations were a bit manic due to it being my mine and my husbands 40th Birthday. On my birthday we drove to see both our families. An hour in the car will exhaust me for days. I decided that if I was going to pay the consequences of trying to be normal, I would have a bloody good time. I did not factor in the migraine that descended upon me whilst we were en route.

 

Luckily I was able to carry on with the day that had been months in the planning. Although the migraine affected my vision for around an hour it wasn’t particularly painful.All my family got together for a meal in a swanky restaurant. I drank champagne and got tipsy. I had the best birthday of my entire life. I felt like I was completely normal and doing what real people do.

The following day we had a joint birthday party, 10-15 people coming to the house and having a good time. Luckily for me a friend helped with the cooking and my husband (despite it being his birthday) did a lot of cleaning. I had to stay in bed due to the fact I developed ptosis and was at the verge of collapse due to the previous days activities. 

The party was an enormous success and we were spoilt by all our friends. Everyone had made a real effort to ensure that they could attend. My husband and I were very grateful for that. It felt like for the first time in a long time we had both had a normal birthday and my illness had not got in the way of us enjoying ourselves.

I paid a high price for being so arrogant in thinking that I could be normal for 48 hours. It sent my health on such a downward spiral that I am only just coming through the other side of it. It is almost 12 months on from those two crazy days and I still look back and smile. They were two of the best days ever. I don’t know if chronic illness has made me cherish those kind of days more because I no longer take them for granted or if they were just two amazing days. The reasons why don’t matter, they made me feel normal and part of the outside world again despite the consequences.

I understand that I was lucky, many others in the chronic illness community would not be able to manage to celebrate in the way we did. Their health would simply not allow them to. I think however you mark the day it should be wherever possible doing something special even if it is just seeing a friend for 30 minutes. Clawing back a little piece normal life for yourself is important just so that a birthday can feel special again rather than just a depressing marker of another year older and another year still sick.

Physiotherapy

/ RachelMorrisMcGeethemyastheniakid / 2 Comments

Tuesday was my first intensive spinal rehabilitation physiotherapy session. The only word that really scared me, out of that sentence was “intensive”. Having done zero exercise for the past seven years, any sentence with the word intensive in it is prone to do that. Sometimes  getting out of bed in the morning without passing out feels like intensive exercise.

My appointment was due to only be an hour but my medical history took up all of that. Due to being booked in at the end of the day meant that the physiotherapist extended the session. I don’t think that could or would have happened on the NHS. I have always found NHS sessions to be rushed due to the fact the poor physios have to see someone every 15-20 minutes or so. There are long waiting lists and government targets to be met. 

Believe me I am not in favour of a private insurance based system, at the end of the day the physiotherapy unit I am attending is all about making money but it is very client centred. Treat the customer badly and they simply won’t return. I don’t want anyone seeking medical treatment reduced to the status of customer over that of patient. I am luckily currently I am in a position to afford the sessions, I am acutely aware that many people have only the NHS to turn to. 

I was very nervous before the session as I had no idea what it would entail. Before I have been pushed into completing exercises that aggravated my conditions and when I sought out the physiotherapists advice my (4) phone calls were not returned so I gave up. My physiotherapist asked if I had attended physiotherapy previously so I outlined my many experiences and made a point to say that I had given up before due to the lack of support when things had gone wrong. She was quick to provide me with the clinics number and let me know she would return my call asap should I run into difficulties.

The appointment got quite emotional for me as I had to tell her what sports I had done in my youth and what exercise activity I had undertaken before I got ill. Out of no where I was filled with an enormous sense of loss, it was like I had the rug pulled out from under me and as the tears flowed I felt horrendously embarrassed. I will be honest that sense of loss is not something I have come to terms with and I don’t think I ever will. I told her I am 40 years old and I feel like I have the body of an 80-year-old.

Knowing that I would be starting physiotherapy has produced a lot of negative inner voice chatter. It tells me that when I became ill I gave up too easily and that is why my body is in the state it is in now. The rational side of me knows that this is untrue. I had to give up dog walking because of the falls and faints I was suffering with in the middle of nowhere with no access to medical help. My three dogs, clever as they are can not ring for an ambulance or administer CPR. Had someone called an ambulance due to the terrain I was walking on it would have been extremely difficult to get to me. It was just no longer safe for me to take part in this activity and it was unreasonable to expect my husband to be responsible for me and three dogs on these outings. Also a lot of activities were given up because of the intense pain they caused. I think the tears were also a sign of my frustration with it all. 

The physiotherapist was quite up front and explained she had never treated a person with Ehlers Danlos Syndrome before, she had completed a little research before my appointment but was extremely grateful for the information that I provided her with. She had not heard of Dysautonomia so I explained it seems to coexist with EDS (but not with all patients) and that mine had progressed from a diagnosis of Postural Orthostatic Tachycardia Syndrome to Severe Autonomic Dysfunction. She made detailed notes and was visibly shocked when I provided her with a list of my regular medication.

Kate – as I will call the physiotherapist to preserve her anonymity, was very quiet and unassuming. I found it difficult to gauge how we were going to work as a team. After all this is a joint effort, I have to do the exercises but she has to ensure I don’t injure myself and we are moving at a pace that suits me. She reassured me that we would be moving at a very slow pace and that I should not expect to see any improvements for at least 12 weeks. Twelve weeks seems like an eternity, so I have to keep reminding myself slow and steady wins the race. Going too quickly could cause a lot of damage and as I was to find out I struggled with even the most basic exercises.

The sessions are based on Pilates, something I have never done before and although the exercises were hard work I enjoyed the fact I had to concentrate so hard. Kate explained that with Pilates you have to think about the mind-body connection whilst you are performing them. You can’t just flail your limbs around, you have to purposely control them and my god is that difficult for someone with hypermobility. Movement comes easily to me as everything moves way out of a normal range, control is physically and mentally exhausting. The only way I can explain it is to try to work with cooked spaghetti, nothing keeps the desired shape!

The first exercise we started with was The Pilates Rest Position, the link explains beautifully how to achieve the correct position. The most important thing for me with this position was to learn to keep my shoulders relaxed and not hunched. Due to my neck being very weak I have a tendency to unconsciously hunch my shoulders in an effort to keep my head up. As my shoulders have been doing this for a while they even do it when I am lying down.

 It’s also very important to breathe correctly. Thankfully due to a wonderful teacher at primary school who taught music and organised the school choir I know how to breathe from my abdomen rather than my chest. Kate was a little thrown when I started breathing correctly without being asked. She wanted to know where I had learnt it. I explained I had been into singing when I was younger and both my parents had practised yoga when I was a child.

I also have a natural tendency to arch my spine when lying down, with my pelvis tilted back so it was important for me to gauge where my neutral position was. I really enjoyed all this learning although towards the end of the appointment I was panicking about how I would remember all of it. At the end of the session print outs were provided. Due to copyright law I am unable to use them on my blog.

The next exercise Kate taught me was the hip twist – these are all level one exercises here page 8, last exercise ( I am struggling to find good of these exercises as they are so basic and have been adapted from classical Pilates). This exercise was unbelievably difficult. It was very hard to keep my pelvis from rolling out and not just letting my leg flop to the side. To control something when you have zero muscle strength is very tiring and after just 3 repetitions my legs felt like jelly and I was getting concerned that I wouldn’t be able to walk out of the clinic even using my crutches. 

The next exercise was the scissors and you can see that on the link above on page 7 of the same PDF. This again was difficult as when you go to place your foot back on the ground you naturally want to arch your back. Throughout the exercise you have to maintain the neutral position. At the time when I was performing the exercises apart from having a rapid onset of fatigue in my leg muscles I thought how on earth could I possibly be strengthening my core (abdominal) muscles. Let me tell you I can feel it this morning, I am amazed at how much my muscles are letting me know they did a bit of work yesterday.

My homework is to complete these exercises twice a day for the next two weeks. I have to start with two sets of 3 reps for each exercise and if I can increase this to two sets of 5 reps. Minimal stuff really but when you haven’t exercised for years that’s more than enough. I have promised Kate that I will not move beyond the tasks that she has set me so that I don’t go into what she calls a boom bust cycle. Which is where I go mad and do far too much and then collapse.

So far I have really enjoyed the exercises and how intensely I have to concentrate whilst doing them. I have already completed this mornings exercises whilst the dogs were out-of-the-way still sleeping upstairs. I will update you with my progress as and when there is some as it is going to be a slow process.

 

Safety Advice

Please don’t undertake any of these exercises without being properly supervised by a fully qualified instructor or physiotherapist. Do not undertake any exercise programme without first speaking to your doctor.